Riley Children's Health 2022-09-26T21:47:03-04:00 https://www.rileychildrens.org/connections/atom https://www.rileychildrens.org/connections/gynecological-oncology-doctor-has-a-personal-story-behind-her-why Gynecological Oncology Doctor has a Personal Story Behind her ‘Why’ 2022-09-26T14:37:00-04:00 2022-09-26T14:49:18-04:00 By IU Health Senior Journalist TJ Banes, tfender1@iuhealth.org

There are numerous life events that can impact a career. For IU Health’s Dr. Jessica Parker one happened recently. She delivered a healthy baby boy at Riley Hospital for Children. Another happened when she was nine.

“No one in my family had been in medicine but my father had a brain tumor the size of a baseball. He passed a little less than a year after his diagnosis,” said Parker. “That experience made me interested in oncology as a young kid.” At first, she thought of pursuing a career in research but eventually decided she wanted to offer the care that she couldn’t provide for her father.

She chose gynecological oncology and joined IU Health in September 2021 after completing her fellowship training at the University of Texas Northwestern. Originally from Pennsylvania, Parker grew up in Florida and completed undergraduate and medical school at the University of Florida. She completed her OB/GYN residency at Stony Brook University, New York.

Parker met her husband, Chris Metter, while serving on a tumor board during her residency. They were married three years ago and moved to Indianapolis where her husband works as a pathologist at another Indiana hospital.

Delivering her first child in the care of Dr. Nicole Scott gave Parker a different view of health care.

“While I have knowledge in obstetrics because I trained in that area, being a patient is a whole new ballgame,” said Parker. “I recognized how important good doctor-patient communication is. A lot of times, we as practitioners don’t know what a patient might be thinking if they don’t hear from us. My OB/GYN was great and I felt like I could ask anything, without judgment.”

Following are five things that women may not know about gynecologic cancers:

> Some gynecologic cancers have few symptoms and are difficult to find early. If you experience abdominal symptoms such as pain, bloating or fullness that doesn't go away, reach out to your doctor.

> Bleeding after menopause is not normal and should be evaluated.

> Cervical cancer can be prevented with a vaccine and may be discovered early with regular pap smears.

> Obesity can increase your risk of some gynecologic cancers, particularly uterine cancer.

> Some gynecologic cancers run in families. Discuss your family history of cancer with your doctor.

In her practice, Parker focuses on helping patients and families with all aspects of gynecologic oncology including surgery, chemotherapy, radiation, palliative care and remission. A special focus is on endometrial and cervical cancers.

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https://www.rileychildrens.org/connections/brave-is-this-little-boys-middle-name Brave is this little boy’s middle name 2022-09-22T14:28:00-04:00 2022-09-22T15:12:12-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Andrew Eyerman’s first-grade class has been in session for several weeks now, but the brave little boy known for his giggles and “tooting” hasn’t been able to join his classmates yet.

At his desk sits a large stuffed bear, delivered by Riley Hospital for Children teacher Stacy Willett.

It’s part of the Riley School Program’s bear-in-the-chair program, which aims to help Riley patients feel a part of their home schools even as they are learning daily lessons in the hospital or at home.

Andrew was diagnosed with leukemia at just 14 months old, so he’s never known anything different, says his mom, Amber, a longtime Riley nurse who stepped away from bedside care in 2018.

She worked for many years in the burn unit Downtown and the PICU at IU Health North. That became more difficult when her son needed treatment.

“I’d be working in a room one day, then the next day I’d be a mom with my son in the same room,” she said. “I had to accept that that part of my nursing career was over.”

She now works as a school nurse, a job she loves and that doesn’t give her flashbacks, she said.

Andrew’s illness has been a difficult journey for the entire family, which also includes his dad, Fred, and siblings Carson and Samantha.

Carson, 14, has saved his little brother’s life twice by donating his own bone marrow. The boys are a 100% match, rare among siblings.

The bond they share is understandably special, says their mom, recalling a picture she took of the two not long after Andrew’s first chemo treatment.

“Carson was rocking him and asking him how his treatment was. He wanted to help. He didn’t understand bone marrow transplant and all that then, and we were hoping we would never need it.”

They did need it. Not once, but twice. First in 2020 and again in 2022. And as blessed as they are that they’ve not needed to go outside the family to find a match, having their older son bear that burden “adds another level of worry,” Amber said.

Still, she said, “Carson donates without blinking.”

Andrew’s leukemia has been beaten back into remission three times now. He’s been through years of chemo, radiation, stem cell transplants and CAR-T therapy, where his own immune cells were removed, “retrained” and reinfused to better attack the stubborn cancer.

Dr. Scott Goebel and Dr. Jodi Skiles have overseen his care on the stem cell side of care, for which Andrew’s parents are grateful.

“They are a huge part of our team,” Amber said. “Dr. Skiles has saved his life more than once.”

As she shares photos of Andrew with various physicians and nurses (special shout out to Jake Harmon) at Riley over the years, she adds, “This is my son’s life. He loves being at Riley. He doesn’t talk much about the sad parts, but the relationships that the nurses and doctors have formed with him he does not forget.”

We met the 7-year-old during an outpatient infusion appointment at Riley, where nurse practitioner Katlyn Antior talked about his journey. She has walked with him along this road since his first stem cell transplant two years ago.

“Andrew is an incredibly brave 7-year-old boy who loves Panda Express and all things Spiderman,” she said. “He has endured extensive therapies over the years, and despite it all, he continues to smile through it.”

One photo his mom took shows him grinning while wearing multiple strands of beads collected over the years, representing all of his procedures, surgeries, “brave days,” blood draws and more.

He is now three months out from his second stem cell transplant, thanks to his brother, and comes to Riley weekly for infusions to ensure his body continues to accept the donor cells.

“We’ll follow him closely for the next year from transplant to make sure he stays in remission,” Antior said.

After that, he’ll be followed by his oncologist, Dr. Sandeep Batra.

The New Palestine family is grateful for the care and support that has surrounded them since Andrew’s diagnosis, including from the schools, the soccer community, Andrew’s Army on Facebook and the Sugar Creek Fire Department, which Amber says has “spoiled our family over and over.”

They long for the days when they can spend Christmas at home – Andrew spent his second, fourth, sixth and seventh Christmases at Riley. But Amber says “Fizzy” the elf, who makes an appearance every Christmas, will find them wherever they are.

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https://www.rileychildrens.org/connections/podcast-maternity-matters-how-the-riley-team-treats-infants-with-jaundice PODCAST: Maternity Matters - How the Riley team treats infants with jaundice 2022-09-20T09:11:00-04:00 2022-09-20T09:15:13-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/maternity-matters-podcast Maternity Matters Podcast 2022-09-20T08:00:00-04:00 2022-09-20T09:17:19-04:00 Listen to recent episodes:

NEW: How the Riley team treats infants with jaundice - Newborns are routinely screened for high bilirubin levels, which allows the medical team to determine any risk of jaundice. This condition is accompanied by a yellowing of the skin. Left untreated, jaundice can cause some serious issues. For the babies who do experience jaundice, there are effective treatments that are carried out either at the hospital or at home. Riley neonatal nurse practitioner Katelyn Redman joined us for a discussion about what parents should know if their newborn falls into this category.

Things to know before a c-section - According to the American College of Obstetricians and Gynecologists, one in three babies are born via cesarean section (c-section). While some of these types of deliveries are scheduled ahead of time, other patients require a c-section in a more emergent situation. In this episode, we hear from a Riley labor and delivery nurse who has cared for many c-section patients. She shares the reasons a patient may require a c-section, the steps to preparing a patient for a c-section and an overview of what recovery is like after this type of delivery.

What to expect during the 20-week ultrasound - As you near the halfway point of your pregnancy, you will be scheduled for a 20-week ultrasound. This appointment allows your provider to get a clear view of the baby and check for any abnormalities. Some patients are referred to Riley's maternal fetal medicine team for additional consultation. Dr. Anthony Shanks is one of the Riley maternal fetal medicine physicians. He provides insight into what happens during the 20-week anatomy scan and what parents can expect.

Physical and occupational therapy for maternity patients - Physical and occupational therapy is available to pregnant patients in the Riley Maternity Tower. From high-risk pregnancy mothers who are hospitalized for weeks to the patients recovering from a C-section, these therapies can make a big difference in their recovery experience. Lauren Broniarczyk, physical therapist, and Kelly Salter, occupational therapist, discuss the ways they interact with these patients each day.

What is NEC? What parents of premature babies should know - Necrotizing enterocolitis is a condition that can impact babies born prematurely. The condition can severely impact a baby's intestines. Often, surgical intervention is required. We spoke with Dr. Troy Markel, a Riley pediatric surgeon, about how the surgical team jumps in action to help these patients.

Patient shares postpartum anxiety struggles and how she found help - May is Mental Health Awareness Month and one IU Health patient hopes sharing her own story will help others. Amanda Phillips noticed herself withdrawing from facets of her life and feeling high levels of anxiety after welcoming her identical twins in 2021. Her OB connected her with the perinatal mood disorders support group, facilitated by an IU Health team member. Amanda says this group of other moms allowed her to feel validated and supported. "That first group meeting I just remember sitting in my car in tears because I knew I had found a release," Amanda said. "I had found people that got it." She says she feels she has made a lot of progress over the last year thanks in, large part, to the support group. She still participates in the group.

How friends and family can support NICU families - For some parents, welcoming a baby into the world comes with the challenge of spending time in the neonatal intensive care unit (NICU). As NICU families navigate this time, there are specific things their friends and family can keep in mind in order to offer the best support. Rachel Scott, a Riley NICU Nest family support coordinator and former NICU mom, shared some advice for those hoping to help parents who may be spending a lot of time in the hospital in those first few weeks or months after their baby's birth.

Obstetrics emergency department supports moms throughout pregnancy - The Riley Maternity Tower obstetrics emergency department is available to pregnant patients from the moment they get a positive pregnancy test all the way through the very end of their pregnancy. The specialized medical team can evaluate the patients who come in with a focus on their pregnancy concerns. Dr. Amanda Underwood, OBGYN, chats about the benefits of having this type of dedicated emergency department. The OB ED is staffed by obstetrics providers who are familiar with common complications and complaints across all spectrums of pregnancy, Underwood said. These providers have devoted their training to treating these issues.

Art therapy provides additional support to families in the Riley Maternity Tower - Families in the Riley Maternity Tower have access to art therapy as a way to cope with the hospital experience. Trained art therapists are there to provide the various activities while also being a safe person to talk to about emotions surrounding hospitalization. From high-risk pregnancy patients to NICU parents, those in the Riley Maternity Tower can turn to the art therapists to help them create special items for their babies. Some pregnant patients who are hospitalized for weeks leading up to delivery choose to focus on creating decorations for their baby's nursery. NICU parents might want to create baby footprint art to commemorate their child's time in the intensive care unit. An art therapist is there with them while they participate in art-making leading them through ways to process everything that's happening.

A new way to care for babies at risk for withdrawal - At Riley Hospital for Children, there is a new care model being used to care for babies at risk for withdrawal. The approach is called "Eat, Sleep, Console" and it focuses on meeting the needs of the baby and empowering parents to respond appropriately. To encourage all of this, babies "room in" with their caregiver. Evidence shows that rooming in can decrease the likelihood of a baby going to the NICU or requiring morphine therapy, which is an escalated treatment for babies with significant withdrawal. We spoke to Dr. Pat Clements, the medical director for well newborn care, about how this family-centered care model is helping to lessen the stigma associated with opioid use disorder.

OB ICU provides highest level of care - The Riley Maternity Tower has the state's only OB Intensive Care Unit. A comprehensive team is able to quickly respond to any issue one of these patients may face. The unit is just steps away from four operating rooms just in case there's a need for any kind of emergency procedure.

Stork team supports patients during high-risk deliveries - In the moments after a baby is born in critical condition, seconds matter. The Riley Maternity Tower Stork Team is at the ready to jump into action. This team includes highly trained neonatologists, nurses, respiratory therapists and advanced practice providers like nurse practitioners and physician assistants. They're present for high-risk deliveries that may require a baby to be resuscitated or other critical care strategies. NICU nurse Andrea Purdy is part of the team and shares more about their role in these types of deliveries.

Music therapy helps families find joy in the NICU - For many families in the NICU, music is a creative outlet that allows them to escape the day to day stress of the unit. Riley music therapists are there to guide them through sessions that help parents bond with their newborns. From writing personalized songs to creating meaningful playlists, there are many ways parents can use music to connect with their baby in the NICU. Music therapist Lauren Servos focuses her work on these patients. She chatted with us about the way music therapy sessions allows families to create happy memories even during a difficult time period.

The COVID-19 vaccine and pregnancy - The CDC recently released new data showing pregnant women with symptomatic COVID-19 have a 70 percent increased risk of death. The virus also increases the risk of preterm birth and admission of the baby to the NICU. We chatted with Dr. Lana Dbeibo, medical director of infection prevention at Methodist Hospital, about what care teams are seeing at hospitals around our area. Plus, she shares her personal experience as a mom who had a baby in May of 2020. She discusses her decision to receive the COVID-19 vaccine while breastfeeding.

When it's not just the 'baby blues' after giving birth - For many women, it's common to experience the 'baby blues' in the first couple of weeks after welcoming a new baby. But, there are those who actually experience a perinatal mood disorder such as depression, obsessive compulsive disorder or PTSD. Tracey McInnes, perinatal mood disorders program coordinator for IU Health, explains the signs a mom may need additional support and shares information about the resources available. From mom support groups to professional therapy, Tracey emphasizes that new moms do not have to feel alone as they navigate their mental health journey.

What to keep in mind when you bring baby home from hospital - So, you finally get to take your new baby home -- now what? Newborns do not come with instructions and first time parents may face a lot of uncertainty in those first few days. Dr. Pat Clements, medical director of well newborn care for Riley Children's Health, offers some advice for families about what to monitor once you leave the hospital. He offers tips on how to ensure your newborn is safe and when to call the pediatrician. Plus, he provides some advice on how to handle COVID-19 concerns.

Milk Lab at Riley Hospital for Children - This week, we hear from one of the NICU team members. Beth Dehoff is part of the NICU Nest team and provides support to families in the unit. She explains the ways they are able to provide guidance to families when they first arrive in the NICU, how parents are encouraged to be involved in their baby's care and what NICU parents should keep in mind as they adjust to life in the hospital.

What's it like in the NICU for families? - This week, we hear from one of the NICU team members. Beth Dehoff is part of the NICU Nest team and provides support to families in the unit. She explains the ways they are able to provide guidance to families when they first arrive in the NICU, how parents are encouraged to be involved in their baby's care and what NICU parents should keep in mind as they adjust to life in the hospital.

Riley midwives provide another option for expectant parents - What does care with a midwife look like? Can you only use a midwife if you plan to have an unmedicated delivery? Darla Berry, one of our Riley Children's Health midwives, debunks some myths and explains what midwifery is really all about.

Lactation consultants offer support to breastfeeding moms - In honor of World Breastfeeding Week, a Riley lactation consultant discusses the resources available to moms who decide to breastfeed. Jamie Kreuzman is an International Board Certified Lactation Consultant (IBCLC) who provides support in the hospital to families soon after they welcome their babies. She shares the top obstacles moms face with breastfeeding, options available to families whose babies must go to the NICU and how parents can get some guidance even once they leave the hospital.

Riley genetic counselors provide support to parents - Riley genetics counselors provide support to families before pregnancy and in the months leading up to delivery. Through different types of screenings, these counselors can help parents prepare for any obstacles their baby may have to overcome after birth. The counselors are trained in genetics, biology, statistics and psychology. Their expertise allows them to guide parents as they learn information about their child. This week, one of those counselors explains what it looks like when a parent opts for genetic testing and how the field has advanced in the last couple of decades.

LifeLine respiratory therapist shares what it's like to care for sickest babies - This week, we hear from a LifeLine team member who is part of the crew that transports the sickest babies to Riley Hospital for Children. Cathy Overley is a respiratory therapist with more than 25 years of experience. She opened up about her passion for this role and how the transport team is able to act as an intensive care unit for these babies until they arrive at Riley.

Pregnancy at age 35 and older - Many women are choosing to delay starting a family. And, there is a lot of information out there about what it means to become pregnant later on in life. In this week's episode, we chat with Dr. Amanda Underwood about pregnancy at age 35 and over. Underwood will be the lead laborist for the Riley Maternity Tower. She discusses what steps to take before becoming pregnant, the types of screenings that may be offered and other helpful information.

Postpartum recovery - What happens after you deliver your little one? Two Riley team members break down the process that occurs once mom, baby and support person move to Mother Baby unit.

What really happens when you go into labor? - Two Riley Children's Health labor and delivery team members share details about what laboring moms can expect once they arrive at the hospital. Can you eat while you're in labor? When do can you get an epidural? Are you able to give birth in a bathtub? They answer some of the frequently asked questions plus provide insight into what it' really like to work in this unit.

A new way to care for moms and babies - Riley Children's Health is changing the way mothers and babies are treated in Indiana. The new Riley Maternity and Newborn Health Tower will open this fall. For the first time, women will be delivering babies at Riley. Dr. Carrie Rouse, a maternal fetal medicine physician, chats about this new care model and what it will mean for families.

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https://www.rileychildrens.org/connections/birthday-bash-celebrates-girl-waiting-for-hero-heart Birthday bash celebrates girl waiting for “hero heart” 2022-09-19T16:58:00-04:00 2022-09-19T17:21:57-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

The Heart Center at Riley Hospital for Children is a place of hope and heart in more ways than one.

Nowhere was that more evident Friday night than at a birthday bash in the teen room for 9-year-old Ava Graham, who has been inpatient for 150-plus days while waiting for a hero heart.

Surrounded by balloons, dragon decorations, cake and presents – but most of all by the love of family and friends – #AmazingAva and her parents, Jackie and Jami, were making the best of the first birthday she’s had to celebrate in the hospital.

Jami said despite the location, the party had her feeling “full of joy,” likely because she could see how animated Ava was as she greeted relatives and friends who came bearing gifts.

Among those dropping by to wish her a happy birthday was fellow patient Edward Sandefur, pushed in a wheelchair by nurses and his mom, Megan.

Edward didn’t feel up to having cake, but he wanted to see Ava open the gift he presented her.

Inside was a large stuffed cat that he purchased with his very own “brave bucks,” a kind of currency awarded to patients who have faced challenges with courage.

“I was gonna try to get that robot dog for you that you wanted, but someone already got it,” Edward told the smiling Ava as she hugged the cat and politely thanked him.

Gestures like that – from a young boy who is facing serious medical issues of his own – demonstrate just how much “heart” can be found among the patients, parents and team members on this unit.

One of Ava’s other friends on the Heart Center, Payton Himo, wasn’t feeling well enough to attend the party, but her mom, Matilda Perez-Himo, came to share in the family’s celebration.

“They are my friends,” Payton’s mom said, even as she worried about her own daughter after a particularly difficult night.

“We are far away from home, and they are a good support for Payton and me. There are some hard days here.”

After she and Edward and the rest of the room sang happy birthday to Ava, Perez-Himo would leave with a full heart and a dragon-themed cupcake for her own little girl down the hall, praying for a better night ahead.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/four-year-old-transplant-patient-gives-the-best-hugs Four-year-old transplant patient “gives the best hugs” 2022-09-15T16:10:00-04:00 2022-09-16T09:56:54-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Beckett Culp celebrated his 4th birthday last week, but he was the one delivering gifts this week at Riley Hospital for Children at IU Health.

The little boy with the big, joyful personality underwent a liver transplant in June and couldn’t wait to say thanks by paying it forward to the next family whose child spends long days and weeks in the hospital.

With help from his parents, Klark and Lauren Culp, Beckett unloaded boxes and bags outside Riley filled with his favorite toys – Hot Wheels – along with Legos, baby dolls, bubble blowers, infant toys and a push car.

All are headed to the Riley Cheer Guild’s toy room, where they will eventually be handed out to hospital patients, particularly on units where Beckett spent time – 9E and 9W, PICU and the transplant playroom.

“I always say it’s like Christmas when we leave the hospital because he gets so many toys while we’re here,” Beckett’s mom said. “So I thought we should do something to give back.”

She went on the Riley Cheer Guild website to see its wish list, then created her own Amazon wish list, adding in some of Beckett’s favorites. She posted the toy drive information on social media, and family and friends stepped up to help.

“We got so much stuff. Every time a box would come to the house, he would be so excited,” Lauren said.

Beckett was diagnosed at 6 months old with a rare genetic disorder that compromised his liver. At the time, his dad was deployed to the Middle East with the U.S. Air Force. It was a rough time for the entire family, which also includes two older children.

He has been under the care of Dr. Jean Molleston, a board-certified pediatric hepatologist, at Riley ever since. IU Health transplant surgeon Dr. Richard Mangus performed Beckett’s liver transplant.

To look at him now, though, you would have no idea how sick he was. He is busy, friendly and funny.

“A spitfire” is how his mom describes him.

“He is not shy at all,” his dad said. “When he comes to Riley, he cracks all the nurses up.”

That includes one of his favorite nurses, Angie Parsley on 9E.

“Beckett is such a fun little boy,” she said. “He is so hilarious; you never know what is going to come out of his mouth. From the first time I met him, I told him we were going to be best friends and that holds true today.”

No doubt, the chocolate ice cream she gave him with his medicine, plus the toys she found for him helped seal the relationship. Beckett “gives the best hugs” and always brings a smile to her face when he comes to Riley, she said. “He is one special little boy.”

It wasn’t surprising when she heard about the toy donation the family made, Parsley said, because they know firsthand how kids at Riley look forward to the toys.

Nurses and child life specialists appreciate the donations as well.

“There is just something about giving a sick kiddo a toy and making them smile or feel comfortable that makes your day,” Parsley said.

Maddie Rodriguez, child life specialist on 9W, sure felt the love Tuesday when she came out to see Beckett and his parents as they dropped off the toys.

Beckett jumped into her arms, and the two laughed and talked about ice cream, school and toys, of course.

“Some of our transplant kids are on the unit for over 200 days, so just seeing these kids come back and celebrating them as they give back to other kids is really amazing,” Rodriguez said.

“Beckett is so sweet. He’s known on our floor for being happy all the time.”

That good cheer can’t help but rub off on those around him.

“I hope Beckett knows how much donating these toys to Riley means to everyone,” Parsley said.

“And I hope he knows that his sweet, spunky little self sure makes nurse Angie feel blessed and honored to know such an amazing little guy.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/teens-life-was-saved-now-he-returns-to-say-thank-you Teen’s life was saved; now he returns to say thank you 2022-09-08T09:22:00-04:00 2022-09-08T09:31:50-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

As a senior in high school, Zane Hendrickson is looking ahead in life. He is filling out college applications, writing scholarship essays and considering a career in law.

And as hard as it is to think about her son leaving home for college, Christa Hendrickson knows how blessed she and Zane both are to be in this season of life.

None of this was promised. None of this seemed likely in January 2021 when Zane, then a sophomore and an elite, competitive swimmer, collapsed on the pool deck at his high school after swimming laps.

He would ultimately suffer cardiac arrest multiple times, as well as a stroke and a seizure at just 15 years old. But a team of physicians, nurses and therapists spread across multiple hospitals worked together feverishly to save this teen.

He spent several weeks in the ICU at Riley, followed by several more weeks in inpatient rehab.

On Saturday, 17-year-old Zane, his mom, extended family and friends will make the trip to Indianapolis from Boonville, Indiana, to celebrate his survival and that of so many others during the Critical Care Reunion and Walkathon on the campus of Riley Hospital for Children.

It is the first time the event will be held in person since 2019, and it is expected to reunite hundreds of former patients, families and healthcare team members.

“Zane has raised some money for the event, and we’re hoping to see some of the critical care physicians and CVICU nurses,” Christa Hendrickson said. “It’s important to us as a family to celebrate where he was to where he is today.”

Zane actually has exceeded his fundraising goal of $1,000. All donations support ongoing research in pediatric asthma, research trial enrollment, congenital heart disease, nursing education, stem cell transplant, extracorporeal membrane oxygenation (ECMO), traumatic brain injury and sepsis.

In those critical hours after his collapse on Jan. 7, 2021, Zane required lifesaving ECMO treatment and had to be transported to Riley, three hours away by ambulance.

He underwent surgery to repair an undiagnosed heart defect, but the stress on his young heart left him in heart failure, a chronic condition in which the heart doesn’t pump blood as efficiently as it should.

Drs. Adam Kean and John Parent continue to follow Zane, monitoring his heart function. Talk of a heart transplant has been set aside for the moment, but it remains a possibility.

Today, the teen has transitioned from competing in the pool to coaching young swimmers. He takes more than a dozen medications each day and eats a low-sodium diet, but otherwise he is the same witty, sarcastic boy, Hendrickson said of her son.

“He’s a thrill seeker, and he can’t do his roller coasters. He can’t compete in sports.”

But he has a good group of friends around him, he got his driver’s license, he went to his junior prom, and he recently graduated from physical therapy.

All are major milestones that his mom wasn’t sure would ever happen as she prayed by his bedside in those dark, early days, worried that her only child would not survive.

Now that same boy is motivated to pay it forward in any way he can, she said.

“The Riley critical care team is very dear to us. We know that it was through their efforts that Zane is still with us today. He realizes what Riley has done for him, and he wants to give back.”

Opening remarks and a remembrance ceremony begin at 9:15 a.m. Saturday across from Simon Family Tower at Riley. The 5K walk steps off at 9:30.

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She almost lost her boy, but the stars aligned that January night - So many times, someone could have said, “No, we can’t do that.” Instead, teams from three hospitals said “yes,” and a 15-year-old boy is alive because of it. Read how Riley and Methodist worked together to save a patient who was clinging to life at an Evansville hospital.

Swimmer defies the odds nine months after he nearly died - He was a champion athlete, until his heart gave out. Now this high school junior hopes to make a splash outside the pool as a coach.

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https://www.rileychildrens.org/connections/new-riley-neurosurgeon-found-her-calling-at-a-young-age New Riley neurosurgeon found her calling at a young age 2022-09-01T09:33:00-04:00 2022-09-01T09:40:16-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Dr. Rabia Qaiser laughs when she thinks back to her days in high school in Pakistan.

While other students were at lunch, she would often hang back in her biology classroom, hoping to help her teacher with a dissection.

“She was studying the nervous system of a frog and I wanted to help,” Dr. Qaiser said. “I told her, ‘I can do it.’ She did not let me. She probably didn’t want to waste a frog.”

The schoolgirl’s time would come.

Now a skilled neurosurgeon, Dr. Qaiser knew at a young age that she wanted to work on the brain and all of its intricate connections.

She joined IU School of Medicine’s Department of Neurological Surgery as associate professor, researcher and pediatric neurosurgeon at Riley Hospital for Children on Aug. 1 (along with Dr. Saul Wilson, who will lead the department’s epilepsy program), but the hospital is not new to her.

Dr. Qaiser, who did her neurosurgery residency at the University of Minnesota Medical School, completed her pediatric neurosurgery fellowship training at Riley in 2015. She also did a fellowship in cerebrovascular neurosurgery at Stanford University Medical Center in 2017, while on the medical staff at West Virginia University’s Ruby Memorial Hospital, flying back and forth from West Virginia to California every month.

BUILDING A CENTER OF EXCELLENCE

She returns to Indiana after serving as director of the Pediatric Neurosurgery Division at Baylor Scott & White McLane Children’s Medical Center in Temple, Texas, for four years. She was associate program director of the Neurosurgery Residency Program at Baylor Scott & White for the past three years.

Her return to Riley is about more than the friends she made and the professional relationships she developed during her time here, she said. The big pull for her was the opportunity to build a program catering to the cerebrovascular pediatric population.

“That is my passion,” she said. “My hope is to make this a center of excellence for pediatric cerebrovascular diseases, including Moyamoya disease, arteriovenous malformations, aneurysms, stroke or any vascular diseases that affect kids. We want them to come here.”

As a leader in the state in providing neurosurgical care to children, Riley already treats patients with many of these conditions, but Dr. Qaiser’s goal is to build the program so that referrals extend beyond Indiana into the Midwest, even nationwide.

To that end, she began meeting with Riley colleagues in complementary disciplines as soon as she arrived to “pick their brains,” so to speak.

Becoming a center of excellence involves the clinical component, research and community outreach, she said.

“All three are really important. We are here to make a difference.”

In addition to seeing patients and working on research, she will assume the roles of fellowship director for pediatric neurosurgery and associate program director for residency in neurosurgery.

“I love teaching residents,” she said. “It’s so nice to have that enthusiasm; it’s contagious. You want to be better for them and your patients.”

HER HEART WAS IN NEUROSURGERY

The eldest of seven children in her family, Dr. Qaiser can’t remember a time when she didn’t want to become a doctor.

Her dad, an engineer, might have expected her to be a cardiologist because he loved explaining EKGs to her, she said. But her heart was set on brain surgery.

Two siblings also followed her into medicine. A sister works in public health in Ireland, and a brother is a pediatric nephrologist finishing up a fellowship in Pakistan.

Dr. Qaiser came to the U.S. from Pakistan in 2006 after medical school to do a pre-residency fellowship at Boston Children’s, which is where she got interested in Moyamoya, a rare blood vessel disorder in which the carotid artery in the skull becomes blocked or narrowed. Up until then, she didn’t think working in pediatrics was a good fit for her.

“I thought it would be really difficult – emotionally and mentally – to take care of sick kids.”

But that changed when she saw the potential for improving lives at an earlier age.

“When I was in Pakistan, I had wanted to become a neurosurgeon since I was in ninth grade. I always wanted to do cerebrovascular because it seemed to be the most challenging, the most delicate part of working with the nervous system,” she said. “I like the challenge.”

But pediatric neurosurgery in Pakistan is not as established as it is in more developed nations, given fewer neurosurgeons, so envisioning super-specialization is difficult, she said.

CHANGING LIVES

When she arrived at Boston Children’s, however, she was amazed to see how well the kids with previously debilitating conditions were doing after treatment.

“They had jobs, they were happy, and they felt like a useful part of society and not a burden on someone,” she said. “It opened my eyes to how much of a difference you can make. And the satisfaction was 100 times more than with adults. The kids give you hugs and they’re happy to see you.”

Dr. Qaiser is married to gastroenterologist Dr. Syed Rizvi, and they currently live six minutes from the hospital, she said. They have two cats, Zeppelin and Floyd – named for the bands – and a third cat who has taken up residence on their back porch. They call him Porchy.

A self-described foodie, she swears by the blueberry goat cheese pie at Three Sisters Café in Broad Ripple. When not exploring new restaurants, she enjoys baking, hiking at Eagle Creek Park and going to movies.

Returning to Riley is like coming home again, she said.

“I feel like I’m coming back to friends and family.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/look-up-in-the-sky-its-riley-teachers-flying-high Look! Up in the sky! It’s Riley teachers flying high! 2022-08-31T11:08:00-04:00 2022-08-31T11:24:55-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

For two Riley Hospital schoolteachers whose feet are normally planted firmly on the ground, Aug. 19 was an adventure in the sky.

Candace McNabb and Tina Lynch became flying aces on a sunny Friday morning over Indy Executive Airport near Zionsville. Each took a turn at the controls, while Michael McGregory, Riley’s director of pharmacy and clinical nutrition, piloted the small plane.

They were participating in teacher orientation flights as part of a new partnership between the Civil Air Patrol and the Riley School Program to bring aerospace and STEM-related lessons into the classroom, or in this case, the hospital room.

McGregory holds the rank of captain and is director of operations for the Indiana Wing of the Civil Air Patrol. He got the wings in motion for this partnership, along with Lt. Col. Jamie Griffith, Indiana Wing Vice Commander and leader of the Indiana Schools Group for CAP.

The idea is to give teachers a taste of piloting a small aircraft to orient them to CAP’s aviation program so they can take that experience back to the classroom and translate it into lessons and activities provided by the Civil Air Patrol.

“It’s a really great program, especially for schools wanting to branch into STEM education (science, technology, engineering and math), where supplies tend to be fairly expensive and school budgets fairly tight,” Griffith said.

“This is a way for Civil Air Patrol to reach in with funding, activities and curriculum, and come alongside teachers to help them begin to implement STEM education and aerospace education in the classroom.”

FLYING ACES

McGregory spoke to Kristin Wikel, manager of Riley’s school program, early in the summer to see if she would be interested in participating in the ACE program (Aerospace Connections in Education), which offers a curriculum package to member teachers for use in their classrooms.

Wikel was all in, pleased to be able to offer Riley patients something beyond their usual school curriculum.

“Having access to things like STEM activities and robotics just brings more awareness of possible careers and stimulates patients’ brains,” she said. “Knowing there are things out there that maybe they haven’t had the opportunity to experience, this allows kids that freedom to explore and to use their brains in other ways.”

While online activities can help simulate a flight experience for students, there’s nothing like hearing from someone in person who has been in the cockpit and at the controls of a plane, Wikel said.

“Just giving them that exposure is so cool. Riley kids deserve access to this program.”

And the fact that McGregory reached out to pitch the ACE program, despite having nothing to do with Riley’s school program, reminded her of what is so special about Riley.

“It’s so cool that we can bring all the uniqueness of our employees here to help Riley kids,” Wikel said.

READY FOR TAKEOFF

So far, McNabb and Lynch are the only two teachers who have been up in the air, but Riley librarian Dena Vincent and teacher Lisa Truitt are scheduled to take flight next month. The hope is that all Riley educators will eventually participate.

McNabb, who works with patients on the inpatient rehab unit, and Lynch, who focuses on patients in behavioral health, said they were excited and a bit nervous before their training flight, which would take them above 3,500 feet in the air.

“Aaaa-mazing!” is how Lynch described it when she was back on the ground. “And terrifying.”

It had been years since she’d been up in a small plane, but to take control of the aircraft was exhilarating, she said. McGregory even got clearance from Air Traffic Control to pass over Riley Hospital during the flight.

At one point when Lynch was up front (the two teachers switched off riding in front and back), McGregory instructed her to take the controls while they were cruising at 150 miles per hour.

“He held his hands up, and said, ‘You’re doing it!’ He would tell us where to look and how to gauge where we were with the horizon,” Lynch said. “He made it very scientific, explaining all the controls and the bumps in the air.”

IT’S ALL FOR THE KIDS

As a teacher in a pediatric hospital setting, Lynch said she and her colleagues are always looking for activities to keep kids’ minds engaged, particularly on school breaks.

“I find that the STEM activities provide my kiddos an opportunity to try things and be successful, and that leads to conversations about career paths,” she said. “It piques their interest, and they can have fun with math, velocity, gravity – it’s all wrapped up in this.”

McNabb said it is exciting to have access to the STEM kits, robotics and instructional aids, especially for kids doing school in a nontraditional setting. On the rehab unit, patients often stay for several weeks.

“Our kids miss field trips and science experiments, so I think using the curriculum the CAP has developed, that is at our fingertips, can create some of those more meaningful experiences while they’re at the hospital,” she said.

Griffith, with the Civil Air Patrol, has already dropped off several STEM kits that patients can try out, along with lesson plans for teachers to adapt for their students’ developmental age.

“We have ACE programs and cadet programs in a variety of schools,” Griffith said, “but partnering with Riley in an inpatient setting is unique. I don’t know of any other program like it in the entire country.”

HER RILEY CONNECTION

Bringing ACE to Riley is important to her because the hospital is near and dear to her heart. Two of her five children are Riley kids.

“Our 11-year-old is a patient of Dr. (Richard) Rink, and she is on this Earth still because of him and Riley oncology,” Griffith said.

“We’ve spent a lot of time at Riley, and we’ve been inpatient for long periods of time, so I know firsthand about the school program, and I know how valuable it is for families to have quality programming while they’re stuck in a hospital room,” she added.

“To be able to use the resources I have with the Civil Air Patrol and come alongside Riley, which I have such a huge heart for because of all they’ve done for us, has just been really fun.”

While Lynch can’t wait to take the lessons she’s learned back to her Riley kids, she could only marvel at what she’d just accomplished.

“Never did I imagine I would be teaching teens in a behavioral health setting or that I would be flying a plane. I’m looking forward to more teachers taking off with it.”

Note: The Civil Air Patrol, the official auxiliary of the U.S. Air Force, is a volunteer organization that supports American communities during times of emergency, while also promoting aviation and related fields through aerospace/STEM education and shaping future leaders through its cadet program.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/nurse-finds-her-dream-team-in-the-emergency-department Nurse finds her dream team in the emergency department 2022-08-30T09:37:00-04:00 2022-08-30T10:10:45-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Hannah Kalk followed in the footsteps of her mother on her path to becoming a nurse.

Kalk, an emergency department nurse at Riley Hospital for Children for nearly seven years, didn’t go into labor and delivery like her mom, but she developed the same passion for her job and love for her patients as Shelly Fenker still has more than 30 years into her career at IU Health Ball Memorial Hospital.

“She loves taking care of patients,” Kalk said about her mom. “Hearing the other nurses talk about her, you know she’s who you want in an emergency, which is how I want to be. I want to be that person you want when things are going south.”

By all accounts, she is.

Tyler Hostetler, day shift coordinator/associate administrator for Riley’s Emergency Medicine and Level 1 Trauma Center, said Kalk is an integral part of the nursing unit, especially in the role of helping lead the team as a weekend option team member.

“Hannah is a dependable charge nurse, a wealth of knowledge and an excellent teacher,” he said. “She is always looking for better, innovative ways to deliver care for our patients. Her contribution to our department is invaluable.”

Nettie Wilson, clinical manager for the ED, describes Kalk as an expert in trauma, leadership, clinical work, innovation and mentorship.

“The list goes on and on,” Wilson said. “Hannah is a fabulous nurse. She is a go-getter, wanting to learn as much as she possibly can to better care for our patients. She is a strong leader as a charge nurse in the ED and in her role in trauma evaluations. And she strongly exhibits our value of team in her interactions with her peers and colleagues.”

A SPECIAL TEAM

Things in the emergency department move fast, but after spending five years working in an adult hospital ED previously, Kalk understands just how important her role at Riley is in not only triaging patients but caring for parents as well.

“I love the ED, and I love it here at Riley. The kids are fun and they’re tough.”

Kalk, who played volleyball on scholarship at East Carolina University, appreciates the teamwork of the ED.

“I grew up playing sports. You go through a lot as a team and become closer. In the ED, you go through a lot of experiences – we call it a trauma bond – and you rely on each other,” she said.

“The ED is not a place you can be on your own. You have to rely on other people. If you are trying to do it by yourself, you’re probably going to drown. It’s such a fast-paced environment.”

As happens in an emergency, Kalk and her colleagues don’t always know what is going on with a child when he or she comes into the ED.

“You get a brief idea of why they’re there, but the child might not be able to tell you anything. It’s sometimes a mystery, like a puzzle.”

She appreciates the challenge of putting the pieces of that puzzle together, with help from parents and other first responders.

“I like interacting with parents. They are usually scared or frustrated if they feel they’re not being listened to. They want to be heard, and I like making them feel better, or at least more comfortable knowing that if their child is really sick, we’ve got them in the best place possible and we’re going to take care of them.”

“BEST PLACE TO BE”

As a mother of two active boys, ages 3 and 5, she can relate. She’s had to take both her sons to the hospital in the past and says she wouldn’t consider going anywhere but Riley if they needed anything more than what an urgent care center could provide.

“It’s the best place to be,” she said, recalling how one of her sons smiled through much of his emergency room experience when he needed stitches, because the team, including child life specialists, eased his fears, communicated with him on his level and distracted him with toys.

Kalk, whose husband is in law enforcement in Hancock County, works weekends, but she puts in plenty of hours during the week serving on numerous committees and councils.

“I am bad at saying no to things, especially if it interests me, which is a lot,” she said, with a smile.

She worked on the department’s sepsis initiative, chairs the ED’s professional practice council and sits on the Riley PPC as her department’s representative. She’s also on the education council for the ED and is part of the ED operations work group, which is always looking for ways to improve patient flow.

“That’s one of the reasons I love the ED so much,” she said. “There’s this constant work toward improvement. I’m involved with several initiatives in the department, so I see how committed our physicians and our nursing leadership are.”

Not just when it comes to caring for kids, but also caring for staff, she said.

“A lot is out of their control, but there is a tremendous amount of that kind of work going on that I appreciate, and I enjoy being involved.”

And if her weekend shifts at the hospital, committee work and busy family life aren’t enough, Kalk is also in school, studying for her nurse practitioner license in pediatric acute care.

FINDING HAPPY ENDINGS

One of the hardest things about working in the ED is not knowing what happens to patients when they go into surgery and/or are moved onto an inpatient floor.

“You see families on their worst day, and then you don’t get to see them later maybe when they are doing better.”

Sometimes, though, they make a special effort to follow patients who have left the ED, she said, recalling one patient who came in with a serious dog bite. She was able to follow up with him the next week and was thrilled to see that Riley plastic surgeons had worked miracles on his little face.

Reuniting with the patient’s mom in that moment was particularly cathartic too, she said.

“Families spend so much time with the nurses upstairs. We just have a few minutes with our patients, but it’s nice to see the follow-up.”

She laughs when she remembers a teen who promised her Chick-fil-A when he got out of surgery a while back.

“I’m still waiting on that kid to bring me Chick-fil-A.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/podcast-maternity-matters-things-to-know-before-a-c-section PODCAST: Maternity Matters - Things to know before a c-section 2022-08-29T11:11:00-04:00 2022-08-30T08:21:20-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/a-mothers-joy-i-have-my-little-girl-back A mother’s joy: “I have my little girl back” 2022-08-25T18:23:00-04:00 2022-08-26T08:24:37-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Christy Graham will never forget the fear and helplessness she felt when she got the news.

Her teenage daughter had been injured in a car accident in their hometown of North Vernon, Indiana, but Graham couldn’t get to the scene.

It wasn’t until she arrived at Riley Hospital for Children in Indianapolis that she learned the extent of her daughter’s injuries.

Natalie Hamilton, then 15, had to be revived twice after the May 26 accident, which happened in front of her boyfriend’s parents’ house when his car was hit from behind, then pushed into oncoming traffic. Natalie, sitting in the passenger seat, absorbed the brunt of the impact when another vehicle struck her side of the car.

She suffered a stroke and two seizures following the accident, which also left her with multiple broken bones, a fractured pelvis, lacerated lung and a traumatic brain injury.

Natalie was airlifted via IU Health LifeLine to Riley, where she underwent multiple surgeries and was placed in a medically induced coma for several weeks to allow her brain to begin to heal. She was on a ventilator for 13 days.

LONG ROAD TO RECOVERY

Dr. Samer Abu-Sultaneh was one of many physicians who treated Natalie in the pediatric intensive care unit at Riley.

“She was very sick,” he said, explaining how her injuries led to other complications during her recovery. “We were worried about her, but she started to turn the corner and improve.”

As a Level 1 Pediatric Trauma Center verified by the American College of Surgeons, Riley offered her the best chance at survival, he believes.

“We have all these subspecialties working together from a physician standpoint, and we have our nursing team, our respiratory therapy team, our rehab physicians, and physical therapy, speech therapy and occupational therapy,” Dr. Abu-Sultaneh said.

Collaboration was key. The journey in the ICU is critical, of course, but it continues in inpatient rehab and even after going home, because therapy will continue for months, if not years.

Natalie spent three weeks in the PICU, before being transferred to Riley’s inpatient rehab unit for the next 10 weeks. There, she learned how to walk and talk again with assistance, as well as other self-care skills using her right arm, which is noticeably weaker than her left.

BABY STEPS = BIG RESULTS

Last week, Natalie was working hard in physical therapy, where PTs Kate Lindemann and Jalayna Gahs gently pushed, supported and cheered on their patient.

“She has worked really hard,” Lindemann said. “When she started with us, she was a dependent transfer out of bed; she couldn’t put weight through her legs. Now, she walks with a walker and has made great progress.”

After PT, Natalie moved on to speech therapy with Katie Smith, who incorporates different strategies to help her patient find the words she wants to say and put them into sentence form.

Smith, who has worked with Natalie since she came to rehab, explained that the teen suffered severe aphasia (difficulty understanding or expressing speech) as a result of the traumatic brain injury.

“We started off with really simple things like yes and no questions, following simple commands, looking at pictures and being able to label them,” Smith said. “She is making great progress with that. There are still some things that are tricky for her to get out, but she does a great job of figuring out ways to work around it and ask for help.”

Natalie’s mom also does a good job of guiding her toward the words she is searching for, Smith said, by choosing a letter or giving her the first sound in a word.

SCARS TELL A STORY

When her daughter was in a coma, Graham considered sharing her story because of the daily miracles she witnessed, but she decided to wait until Natalie could decide for herself if she wanted to tell her story.

That day came last week when Natalie said she was ready. She told her mom she wanted to share her story because she was a survivor.

“Your scars tell your story, don’t they,” Graham said to her daughter. “You are a walking testament.”

If Natalie speaks haltingly, the miracle is that she is speaking at all, her mom believes. She said her first words since before the accident just a few weeks ago.

During therapy when Graham says that her first words were “mom” and “boogity” (the latter a word Natalie had never previously said), Natalie corrects her.

“Mom, you understand that’s not my first words.”

Graham looks puzzled, then remembers a brief moment during a bath when Natalie looked up at her and whispered, “Goodbye.”

GOING HOME

“I said, ‘Where are you going?’ and she said, ‘I’m going home.’ She said it twice, first a real soft whisper, then it got louder, then soft,” Graham recalled.

“I had happy tears and the nurse did too, then I got to thinking, what does she know that I don’t know? Is there something going on inside her that I don’t know?”

Graham, who refused to leave her daughter’s side for the duration of her stay, said even the Ronald McDonald House next to Riley was too far for her to go.

“I have bad knees. I couldn’t get here fast enough if I had to,” she said with a chuckle. “I would sleep on the floor if I had to.”

That night, after her daughter first said “Goodbye,” Graham said she was determined to watch Natalie’s heartrate and breathing all night, fearing that “going home” meant a final goodbye.

“I don’t think I slept, girl,” she told her daughter. “You have fought too hard to be leaving now. You’re not going anywhere.”

Indeed, the only place Natalie is going is home. She has her eye on that prize and can’t wait. Her mom admits to being excited and scared at the same time.

“It’s going to be very emotional for us to leave,” she said. “I will cry because this place has become home. These people have become family.”

FINDING THE WORDS

As part of Natalie’s speech therapy session with Smith in rehab, the teen offers bits and pieces about her recovery, with her mom filling in the missing pieces.

“I’m Natalie Hamilton and I was in a car accident on May 26. Been here three months.”

Her mom prompts her, “And you had a stroke.”

“Stroke,” Natalie repeats.

“And a seizure,” her mom says.

“Seizure,” Natalie says, nodding her head.

“And you had a lot of broken bones.”

“Yes,” Natalie says.

Natalie remembers nothing from the accident except what her mother and boyfriend have told her. But she was able to meet and thank the first responders who saved her life at the scene and transported her to Riley.

After achieving multiple goals in rehab, Graham and her daughter were granted a day pass to attend a fundraiser/birthday party Aug. 7 in North Vernon, where hundreds gathered to wish her well.

The tears flowed freely that day. Tears of relief, joy and gratitude.

“I have my little girl back,” Graham said. “She’s still my teenager, but she’s my little girl.”

Asked how she has been able to hang on through these past three months, Graham said simply, “God. A lot of faith in God. And I have nothing but the utmost respect for this hospital and thank them daily. I thank them and I thank God.”

BELL AND BUTTERFLY

On Aug. 23, it was Natalie’s turn to ring the bell and pin her butterfly to the wall of the Riley rehab unit. She had watched many others go before her, but this was her time to shine.

After three months in the hospital, she couldn’t wait to get home to her own bed and to eat at her favorite Mexican restaurant.

“She came in in a bad way and she’s walking out in a good way,” Graham said of her daughter, who turned 16 on Aug. 8. “She is determined. We have to take the wheelchair and the walker, but we are walking out of rehab.”

As Dr. Abu-Sultaneh said, there is an entire team of people who worked to get Natalie to this point, and he was beyond excited to hear that she was going home to continue her recovery.

“It is a group effort,” he said. “First, having all the people coming in and helping to save a life, then the collaboration with inpatient rehab and other services to make sure kids are recovering and getting to their maximum potential.”

Photos and video by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/puppy-love-he-has-a-cleft-just-like-me Puppy love: “He has a cleft just like me!” 2022-08-24T16:34:00-04:00 2022-08-24T16:53:25-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

It was love at first sight.

Emmalyn Allgood couldn’t believe it when she came face to face with the little pup named Maverick.

The cockapoo had a sweet, crooked smile that reminded her of herself.

“Mommy, look! He has a cleft just like me!”

A cleft lip happens when the tissue that makes up the lip does not join completely before birth, resulting in an opening in the upper lip. A cleft palate is an opening in the roof of the mouth, generally requiring multiple surgeries over time.

Emmalyn, daughter of April and Jack Allgood of Brownsburg, was born with a cleft lip and palate and had two surgeries at Riley Hospital for Children in her first year of life.

“For sure, she’ll have two more,” April said. “Riley has been our saving grace. They are like angels from heaven.”

Now 5, Emmalyn has not let her cleft get in the way of living her best life. She is active in cheer, soccer and gymnastics.

And now she has a best buddy in the form of a dog named Maverick, thanks to a matchmaking service of sorts and good people.

It all started when Celeste Edwards, owner of a small cockapoo breeder named Heavenly Cockapoos, discovered one of the pups in a new litter had a cleft lip.

She thought it would be fitting for him to go to a cleft-affected family, so she reached out to Caitlin Church, coordinator of Riley’s Cleft & Craniofacial Program, for help.

Church in turn contacted Monica Bush, founder of Legendary Smiles, a local parent-led cleft support group.

Bush and her husband have a 10-year-old son born with a cleft lip and palate who is also treated at Riley. While Legendary Smiles was formed in 2020, Bush has been advocating for the cleft community for the past decade.

“We have been through the gamut of a complicated cleft case, and I think we can help people,” she said. “We birthed Legendary Smiles out of the need we had in our own hearts to be that listening ear for people and help them navigate the journey.”

It’s a lot to handle for any parent, she said, so when she heard about the puppy in need of a good home, she shared a post on her group’s Facebook page, looking for a forever home for Maverick in a cleft-affected family.

Within hours, they had matched Maverick with Emmalyn.

“He is a perfect fit for our family,” said April, recalling how she cried over the phone with Edwards and realized “it was a God thing” that Maverick was to come into their lives.

Still just a few months old, Maverick has found a forever friend in Emmalyn, and the same goes for her.

The relationship is a blessing for both.

“As a cleft-affected family, we’ve been able to buy stuffed animals with cleft and we have a lot of books about it,” April said.

Emmalyn, who just started preschool, even made her own book, which she shared with her classmates.

“She is super proud and loves to tell people about her cleft, but having Maverick has been the best thing ever. His little tooth sticks out and she has a tooth growing in her cleft as well,” April said.

“I think it’s been so powerful for her because she gets to see that every single day. It has really helped her realize she’s perfect just the way she is.”

Bush, whose background is in social work, is thrilled to have played a part in connecting Emmalyn and Maverick.

“She is always going to remember this. To have a little therapy dog right next to you as a best buddy, you couldn’t ask for more,” she said.

And sharing their story is a wonderful way to educate people about the complexities of cleft and craniofacial issues, Bush said.

In the end though, she wants to put a smile on people’s faces.

“If people can look at this story and find a little bit of hope and good faith, that’s all we care about.”

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https://www.rileychildrens.org/connections/therapeutic-recreation-plays-to-patients-interests Therapeutic recreation plays to patients’ interests 2022-08-16T16:53:00-04:00 2022-08-16T17:46:19-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Mary Myers’ job might seem like fun and games, but there’s a lot of serious work going on when she visits with patients at Riley Hospital for Children.

As one of four therapeutic recreation specialists, she works with patients doing things they love – whether it’s cooking, adaptive yoga, golf, tai chi, bowling, wheelchair dancing or playing games.

And it’s just what the doctor ordered.

Therapeutic recreation is different from traditional physical or occupational therapy, but it is complementary, says Brenda Hinton, inpatient manager for rehab services.

“They (therapists) really delve into patient interests, hobbies, what they enjoy,” Hinton said. “In doing that, they are trying to problem-solve, figuring out how they can adapt an activity that the patient enjoys.”

So, while other therapists focus on helping patients manage basic life skills, such as taking a shower, getting dressed and brushing their teeth, therapeutic recreation specialists can concentrate on more fun things.

Like baking chocolate chip cookies.

That’s what Payton Himo was looking forward to when Myers stopped in to see her on the Heart Center recently. Payton, 10, is preparing to be listed for a heart transplant and is always ready for a diversion from life in the hospital.

She and Myers have baked cookies, pretzels and pizza in Payton’s Easy-Bake oven. But they also play games, make slime and work with Play-Doh. It not only keeps Payton busy, it helps moderate her anxiety, her mom said.

“We try to find out what makes them tick, what they’re struggling with and try to help them through it,” Myers said.

That includes lots of activities – recreational, sensory, cognitive and developmental play, depending on the age of the patient.

Myers worked with heart transplant recipient Jeff Taber to set up an improvised kitchen so he could practice making new dishes with an Instant Pot. The trained chef was able to tap into something he loves while also working on physical and cognitive skills to keep him in shape as he waited months for a new heart.

Myers, who previously worked in the adult healthcare setting, joined Riley two years ago. She wasn’t looking for a job change, but when the Riley position opened, it seemed right, she said.

“It was a total God thing. My son was a Riley kid. He’s an adult now, but we almost lost him a few times. Thanks to this hospital, we didn’t.”

The other TR specialists are Jaye Hajduk, who works in pediatric rehab; Michaella Kaneversky, who sees patients on the behavioral health unit, the Charis Center for Eating Disorders and occasionally in Simon Family Tower; and Katie Smith, who focuses on inpatient rehab, as well as behavioral health and Simon Family Tower.

Kaneversky concentrates on strengthening coping skills for many of her patients – teaching games that encourage social interaction and communication.

“A lot of these kids are feeling isolated, so my therapy is focused on finding positive outlets for them to engage with others, whether through artistic activities, music or games,” she said.

Smith, who has a degree in recreational therapy from IU Bloomington, said this is her dream job.

“I’ve always wanted to be in a clinical hospital setting.”

With her patients in rehab, she helps them “practice” for life outside the hospital walls, preparing them for situations and questions from other kids.

“We do a lot of role-playing,” she said.

In younger patients, she relies on toys and stuffed animals to act things out. But for teens, they might take a trip down to a busier area of the hospital, where they can practice for different situations.

For instance, patients who go back to school might feel self-conscious if they are using a wheelchair or a walker, or maybe they have burn scars.

“A kid might ask them, ‘Why do you need a wheelchair, or why do you look like that?’ We help mentally prepare them for that situation so they aren’t shocked when it happens,” Smith said.

Hajduk worked with a former patient who had been a champion dirt bike racer before an accident damaged his spine. Lucas Grounds spent months rehabbing at Riley with traditional therapy.

But as a therapeutic recreation specialist, she arranged a visit to Lucas Oil Stadium for him, his family and his therapy team so they could learn to maneuver the huge stadium with him in a wheelchair, preparing the family to attend a dirt bike competition upon his discharge from the hospital.

Hinton would love to see the therapeutic recreation program continue to grow.

“Kids are excited to see the therapeutic recreation people because they know they’re going to have fun,” she said. “We’ve had a tremendous response, but we know there are way more kids out there we can help.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/from-anxious-picu-parent-to-skilled-picu-nurse From anxious PICU parent to skilled PICU nurse 2022-08-15T16:19:00-04:00 2022-08-15T16:40:03-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Shakiyla Rogers didn’t dare dream about this day when her tiny son was fighting for his life in the NICU at IU Health North Hospital five years ago.

But sure enough, Caiden Rogers took a giant step forward this month when he walked into kindergarten for the first time.

Caiden, born at just 24 weeks’ gestation and weighing 1 pound, 15 ounces, spent six months in the hospital, first in the NICU at North and then in the PICU at Riley Hospital for Children in Downtown Indianapolis.

When he was discharged from the hospital, he went home with a feeding tube, as well as a trach tube and ventilator to help him breathe.

Rogers found strength during that time in the care that surrounded her, and it inspired her to want to give back.

She began working as a unit tech/secretary in the PICU, then resurrected her dream of going to nursing school.

“I always wanted to be a nurse, but I put it on the back burner,” she said in a previous interview. “I thought I didn’t have enough time for school. But after I had my son and we went home, I realized I really loved pediatric nursing, and I was pretty much a nurse at home already with all of his equipment.”

Fast forward to today, and Rogers is working as a registered nurse on the same unit at Riley where her son was a patient.

“It’s easier for me being on the other side of things now,” she said. “I’ve been that parent who has sat in the hospital by their child. I’m still that parent sometimes.”

That’s because Caiden continues to be treated for asthma periodically, and when that happens, she becomes mom again, leaving the nursing to her colleagues.

As a nurse and a mom who has been through the long and difficult days of life in the PICU, she believes she can provide added support to other parents who worry that they can’t step up to the challenges required of families who have kids dealing with serious healthcare issues.

“I think they really appreciate it. It’s hard for others to believe you when you’re saying everything’s going to be OK. But when it’s coming from a parent who’s been through it, I think it makes them more comfortable,” Rogers said.

Courtney Espinosa, family support coordinator for the Riley NICU Nest program, said Rogers’ lived experience as the mom of a trach/vent kiddo is invaluable in her work as a nurse.

“All of us on the NICU Nest family support team have kiddos with special healthcare needs,” said Espinosa, whose son also relied on a trach, a vent and a feeding tube after he was born.

“It’s easy for doctors to tell you what to expect, but it’s drastically different to hear it from another parent who actually makes you feel like, ‘OK, I can probably do this.’ ”

That’s what Espinosa was able to do for Rogers, and Rogers does the same for families whose patients are in her care.

“At the time, she was just a mom getting started in all this,” Espinosa said, “and I was on the other side of it and working at Riley.”

Now, Rogers is on the other side of it as well. Caiden has been off the trach and vent for four years.

“I think all of us who have had kids with trachs and vents, it’s just a unique experience, and I think we all kind of feel like we want to help people … in that world,” Espinosa said. “I love seeing her doing that out in the world, too.”

To look at him today, Rogers says you wouldn’t know Caiden, 5, had such a rough start in life.

For one thing, he’s a champion speller. To demonstrate his skills, she asks him to spell a word. He suggests cow. She says that’s too easy.

“Spell elephant,” she said.

He doesn’t hesitate: “E-l-e-p-h-a-n-t!” Then he dissolves into giggles.

Fulfilling her dream of becoming a nurse while seeing her child thrive gives Rogers immense satisfaction.

Not that it’s been easy.

“I always felt like my place in life was to be able to care for others, so I’m glad to be able to give back to Riley by working there,” she said.

“It’s a tough time with the pandemic and all, and it’s been hard for new nursing grads, but I’ve learned a lot, and now I’m teaching other nurses.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/her-12-year-old-son-suddenly-couldnt-tie-his-shoes Her 12-year-old son suddenly couldn’t tie his shoes 2022-08-14T11:14:00-04:00 2022-08-14T12:57:50-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Maria Sandoval will never forget the day she realized something was wrong with her 12-year-old son, Hector Jr.

It was May 23, the last week of school, and she was rushing him to get ready so she could drop him off at the babysitter on her way to work.

He wasn’t moving very fast.

“I thought he was joking around. I told him, ‘Hurry up, tie your shoes, we gotta go.’

“He said, ‘Mom, I can’t tie my shoe.’”

She was not amused. “What do you mean you can’t tie your shoe? You know how to tie your shoes.”

When she looked closer, she saw that his hands were curled up like fists. He couldn’t relax them, and he couldn’t tie his shoe.

Hector had seemed to be a little off his game for a few months, but nothing that alarmed her. She took him to his pediatrician that day, but all she remembers the physician saying is that it could be due to playing video games. He did refer her to a neurologist, but she couldn’t get an appointment for six months.

Sandoval’s mama bear instincts kicked into high gear when she couldn’t get answers for her son’s seemingly sudden physical decline.

After trips to two hospitals in northern Indiana, the Elkhart mom of seven brought Hector down to Riley Hospital for Children.

“I would have taken him there the first day if I had known,” she said. “I had to make a bed in the back of the car for him because he couldn’t sit down without crying.”

By then, his body hurt to the touch, she said. He couldn’t walk or use the bathroom by himself.

They arrived in the emergency department at Riley on June 26 and didn’t leave the hospital for 32 days, the majority of that time spent in inpatient rehab, where her son relearned basic skills that would allow him to be independent again.

Riley neurologists diagnosed Hector with CIDP (chronic inflammatory demyelinating polyneuropathy), a rare autoimmune disorder in which the body attacks the myelin sheaths, the fatty coverings on the fibers that insulate and protect the nerves.

Considered the chronic form of Guillain-Barre syndrome, CIDP often starts with tingling or numbness in the toes and fingers, progressing to weakness and mobility issues in the arms and legs.

There is no known cause for the illness, but early treatment includes steroids and IVIG (intravenous immunoglobulin) transfusions.

Hector’s mom can’t find the words to express her gratitude to the Riley team for giving her answers.

“I don’t know how to thank all those doctors. Just saying thank you is not enough,” Sandoval said. “They don’t know exactly what they did for me in fixing my son.”

Once he was strong enough, Hector was transferred to Riley’s inpatient rehab unit, where he learned to walk independently again, feed and dress himself, and to manage other personal-care skills.

Hector’s physician care team included Dr. Laura Black, Dr. Lisa Smith, Dr. Francisco Angulo-Parker, Dr. Michael Goodman and others.

Physician assistant Ben Schrock, who oversees inpatient rehab, said in patients with CIDP, the rehab team looks at overall weakness, gait abnormalities and their ability to use their hands and legs in the ways they are used to.

“When he first came to us, he needed assistance getting up and transferring from bed to chair. His recovery went really well,” Schrock said. “He worked very hard with physical and occupational therapy.”

Upon discharge two weeks ago, Hector was able to eat independently and walk with supervision. He has been fitted with leg braces for additional support and has a walker to use at school when he gets tired.

He received an additional dose of IVIG before he left the hospital and will continue that therapy as well as physical therapy in the weeks to come, Schrock said.

“Guillain-Barre typically lasts six to eight weeks, but CIDP can go much longer, and outcomes are a lot more variable,” he added. “He’s going to be looking at continued therapy and continued improvement. These recoveries are long. He’s a lot closer to his baseline, but he still needs work to get there.”

While patients may recover from CIDP, they could have flair-ups down the road, causing numbness and weakness. The longer the disease goes untreated, the more nerve damage can limit sensory and motor functions.

Sandoval said her son, who returned to school last week, is walking a little bit straighter every day.

“I am happy and proud of all those doctors because they told me what was going on and that he would be OK,” she said.

“I know he’s going to have a long journey, but at least I know what to expect and what he’s going to go through. I got answers and they gave them to me.”

Nikki Goedeker, whose son, Brady, was diagnosed with CIDP last year at the age of 13, understands that journey better than most. Brady also was treated at Riley and continues therapy and IVIG treatments today. But he continues to improve.

She offers this advice for the Sandoval family: “Surround yourself with people who can help lift you up and cheer you on. There are amazing doctors, nurses and therapists in this community. I believe our family has gotten stronger and our son will be able to get through anything life throws at him because of this experience.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/we-bond-to-a-shared-beat-here “We bond to a shared beat here” 2022-08-11T14:23:00-04:00 2022-08-11T15:46:15-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

The soft, soothing voice of Bella Klotz puts everyone in the room at ease. Especially tiny Olivia Cruz Solis.

Klotz is a music therapist who spends most of her time with the patients in the pediatric intensive care unit at Riley Hospital for Children.

PICU patients are among the sickest in the hospital, but 7-month-old Olivia is having a good day. Her eyes lock onto Klotz’s as the therapist strums a guitar and sings a lullaby, “I See the Moon.”

Olivia wears a spectacular smile as she listens to Klotz’s gentle voice, while others in the room tune out the beeps of medical equipment that threaten to distract from this special moment.

“We bond to a shared beat here,” Klotz says as she pulls out other instruments of therapy – a thin drum, a cabasa (another percussion instrument), a xylophone, rattles and books.

“We do finger wiggles and tummy tickles. Shall we show ‘em your skills, Olivia?”

She launches into another song, “The Ants Go Marching,” while she uses Olivia’s tiny feet to tap the drum she’s quietly beating and adapts the song to the patient before her.

“The ants go marching one by one, hurrah, hurrah. The ants go marching one by one, hurrah, hurrah. The ants go marching one by one, Olivia stops to play the drum, and they all go marching down, to the ground, to get out of the rain.”

“Music therapy here at Riley provides an additional layer of support and an opportunity for patients and their families to connect in a way that they normally aren’t able to,” Klotz said.

In concert with other therapies that Olivia receives, Klotz is able to help support her patient’s sensory development, while her colleagues work on other developmental skills.

Olivia has been at Riley since she was born in January, suffering from spina bifida, hydrocephalus and a heart valve defect. She has endured two heart procedures (Dr. Mark Turrentine) and multiple brain surgeries (Dr. Laurie Ackerman), as well as a tracheostomy and placement of a G-tube for feeding.

All of this hasn’t dimmed her light. She is sweet and feisty, says her great aunt, Connie Bastin. And she is strong.

Olivia’s mom, Casey Solis, says just having her daughter here is more than she thought possible. Doctors had prepared her for serious complications before Olivia’s birth at 37 weeks.

She wasn’t even sure her baby was going to make it. But Olivia’s activity in the womb gave her hope.

“She was wild,” Solis said, adding that after previous lost pregnancies, she is finally a first-time mom. “At 37, I finally have my baby.”

Klotz has been working with Olivia since the little girl moved over to the PICU from the NICU. The music therapist has been a constant in Olivia’s life, said Bastin, who goes by Grandma in this room and can’t wait to take Olivia shopping someday.

“She loves the music,” Bastin said. “And she is just the love of our lives.”

“She’s a champ,” said Klotz of her young patient. When Klotz begins singing, “How Much Is That Doggy in the Window?” Olivia bats her impossibly long eyelashes and smiles.

It’s almost a miracle that she can smile, considering all she’s been through, but that’s why therapy is all the more important.

“Anything we can do to provide some sense of normalcy and engage them in a way that another child might be able to do outside the hospital, we do it,” Klotz said.

“It doesn’t cross people’s minds sometimes that some babies are here almost their entire first year,” she added. “For this trach and vent population, it is a lengthy stay. When you think of all those firsts, those things we take for granted, it’s a big deal when a milestone is met.”

Olivia has improved by leaps and bounds, Klotz said. Every time she meets a developmental milestone, like grasping for a toy or holding up her head, it’s reason to celebrate.

Earlier this week, Olivia took a ride around the unit in a Riley wagon. It was her first trip outside her room, with the exception of medical procedures. Imagine what it will be like for to go outside for the first time.

“We can’t wait until we can take her out and show her the trees,” Bastin said. “Everything is new to her.”

Olivia could go home as early as next week, once Solis and Bastin complete their solo caregiving sessions under the watchful eye of Riley nurses.

“She’s kicking butt,” Solis said of her daughter. “She has surprised everybody.”

Another heart surgery is in her future, but the hope is that she can settle in at home for a few months before returning to Riley.

Klotz ends her session with a book called “Snuggle Puppy.” She encourages Olivia to help turn the pages while she sings, “Fuzzy little Snuggle Puppy, I love you.”

“We try our best to settle their heartrate, raise their oxygenation level and soothe in every way,” Klotz said.

It seems to be working, as Olivia stretches and yawns.

“I love this population of patients because they are here for such a long time,” the therapist said. “The ones we are able to provide music therapy to really benefit.”

Photos and video by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/monkeypox-and-kids-what-you-need-to-know Monkeypox and kids: What you need to know 2022-08-09T15:54:00-04:00 2022-08-09T16:09:53-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Like we all need one more thing to worry about, right?

Monkeypox. What is it? How do you get it? And should you worry about your kids contracting it?

“Overall, the risk in children is very low, but there have been cases in kids, including in Indiana,” said Riley Children’s Health infectious disease physician Dr. Chandy John.

Like most pediatric physicians, he doesn’t want to sound the alarm at this point because, in fact, the risk is so low, “but it’s not zero,” he added, and it’s always better to be armed with good information to reduce risk to your family.

Maybe you haven’t paid much attention to the news swirling around this latest virus, but monkeypox has been declared a federal health emergency in the United States.

It is a viral disease that previously affected rodents and primates in rainforest areas of west and central Africa but now has been transmitted to humans.

It’s not another Covid, infectious disease doctors emphasize, but it is a disease that we still don’t know much about, so here are some things for parents to consider:

  • As of Aug. 8, 2022, the Centers for Disease Control reported 8,934 cases of monkeypox/orthopoxvirus in the U.S., with 77 of those in Indiana. Cases have been steadily climbing since the first reported case in the U.S. in May.
  • To date, just five cases have been reported in children in the U.S., but two of those have been in Indiana.
  • Symptoms include fever, muscle aches, backache, swollen lymph nodes, chills and exhaustion. A rash, that resembles pimples or blisters, can also appear on parts of the body about one to three days after exposure.
  • The virus is most often spread through direct contact with the monkeypox rash or scabs, or through bodily fluids from an infected person, said Kristen Kelley, director of quality, safety and infection prevention at IU Health. But it can also be spread by touching clothing, bedding or other surfaces used by someone with the virus.
  • The skin lesions generally resolve within two to four weeks. Someone is considered infectious until their lesions have crusted and the scabs have fallen off, according to the CDC.
  • Pregnant people can pass the virus on to their new baby.
  • While it is disproportionately affecting certain populations more frequently (primarily men who have sex with other men), it has the potential to spread to the general population.
  • Young children under the age of 8, particularly those with eczema and other skin conditions, and children with immunocompromising conditions may be at increased risk of severe disease, the CDC warns.
  • Children are not likely to contract the virus on the playground or even at school, health officials say. It is spread mainly through close and prolonged skin-to-skin contact.
  • There is an approved vaccine for adults 18 and older to prevent monkeypox, but the shot can be given to children with a known exposure on a case-by-case basis, with special authorization.
  • There have been no reported deaths in the U.S. due to the virus.

Dr. John recommends that parents who suspect their child has been exposed to someone with monkeypox or who see skin lesions that look like they could be monkeypox should turn to their pediatrician, who can determine if testing and treatment are required and can refer the patient to Riley if warranted.

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https://www.rileychildrens.org/connections/if-mom-is-not-ok-then-baby-is-not-ok “If mom is not OK, then baby is not OK” 2022-08-08T09:41:00-04:00 2022-08-08T10:49:18-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Nissa Walker is a nurse by training, but nothing prepared her for the overwhelming anxiety and confusion she felt after the birth of her first child.

She sensed something was not right with her emotional state during pregnancy but figured once her baby was born, all would be bliss.

Instead, she remembers sobbing when she left the Johnson County hospital where she delivered, with a healthy baby but unsure how she would cope in the weeks ahead.

Looking back to that tumultuous time six years ago, Walker can only marvel at how far she has come, thanks to therapy, a supportive family and IU Health’s Perinatal Mood and Anxiety Disorder Program, housed at Riley Hospital for Children but serving women at multiple IUH hospitals.

“I was convinced I was psychotic,” she said. “It was the most terrifying thing I’ve ever experienced.”

“I WAS SCARED”

Walker, now a mother of two, was suffering from postpartum anxiety with some obsessive-compulsive disorder and depression mixed in.

Getting that diagnosis through IU Health was the beginning of her healing. It came about six months after the birth of her oldest son, Mason, now 6. Since that time, she and her husband, Daniel, have welcomed another son, Rylan, who turns 2 in September.

In those early days with Mason, Walker, who still didn’t have a name for what was happening to her, relied heavily on her grandmother to help with the baby while her husband was working.

Walker said she was so desperate that she was showing up in emergency rooms near her Johnson County home in a panic but was sent home because assessments revealed she wasn’t suicidal.

To this day, she still doesn’t understand how no one she saw recognized what was happening to her. True, her symptoms didn’t indicate depression, but she was hyper-vigilant, struggling with intrusive thoughts and unable to rest while her baby slept.

Getting help was vital. But she was scared to reach out, after falling short in her previous attempts.

“YOU ARE GOING TO BE OK”

What she thought was psychosis was more in line with hyper-anxiety, she said. It took a phone call with Birdie Meyer, then coordinator of IU Health’s Perinatal Mood Disorders Program, to see the light.

There would be more phone calls, then an in-person meeting on a Monday morning after her husband drove her there.

Meyer told Walker she was suffering from postpartum anxiety, OCD and depression, but that it was 100 percent treatable.

“You are going to be OK,” Walker remembers her saying.

“I don’t think I am, Birdie,” she replied.

“And she said, ‘I promise you, you’re going to be OK.’

And it was like I could just breathe. I trusted in her. She knew everything I was thinking before I said it, which signaled to me this isn’t just me.”

That was the beginning of the work. But at least Walker felt heard and understood. She began seeing a therapist and going to IU Health support group meetings, where she met other women from all walks of life who were suffering as she was. Some, who were further along in the process, offered hope that things would be OK.

“I was scared to go to group at first,” she said. “A lot of postpartum women think someone is going to take your baby because you’re telling them you’re not mentally sound.”

Instead, she found a community of women who understood her pain and helped her realize she was not alone.

PANDEMIC BABY

Three years later, she and her husband felt the time was right to have a second child. She quickly became pregnant, but three months in, the pandemic hit.

Knowing she was going to need even more support, she reconnected with the IUH postpartum group, now being led by Tracey McInnes, a survivor herself of postpartum depression, anxiety and PTSD.

The two have built a strong relationship; Walker not only returned to group sessions, which continue to be held virtually, she now facilitates meetings. “I attend group religiously,” she said.

“I consider Tracey a mentor, a colleague, a friend. I can lean on her; she can lean on me. We are really in this thing together.”

McInnes describes Walker as “an amazing woman, mother and support to others.”

One in five women are affected by perinatal mood and anxiety disorders, McInnes said. The program she oversees provides screening, education and treatment referrals.

At every IU Health hospital, new moms should receive the Edinburgh Postnatal Depression Screening (EPDS) before discharge. The maximum score is 30. Anytime a mom scores 12 or higher, she is referred to the mood disorder program for follow-up care.

Since the pandemic, the number of referrals has risen exponentially, McInnes said, estimating she receives on average 100 new referrals a month into the program.

“I think the biggest need we have is more resources,” she said. “Some states have partial hospitalization/outpatient programs, specific to perinatal mood and anxiety disorders (PMADs). New York and North Carolina have intensive inpatient programs. In Indiana, it’s a struggle to find a therapist who specializes in PMADs (or even has had training on them). We have our work cut out for us.”

More screening and education would also help. Walker said the only exposure to the topic she can remember was an afterschool special she saw as a child, where women in postpartum crisis were depicted in dark ways.

“It seemed a taboo thing that didn’t happen to regular people,” she said.

Women’s mental health must be prioritized, Walker added.

“I don’t think any woman should leave the hospital without the resources, without the education on perinatal mood and anxiety disorder and someone to call. I think it should be a routine part of maternal health. If mom is not ok, then baby is not ok.”

McInnes reiterates that point.

“It is detectable, and there are treatment options available,” she added. “Left untreated, there can be devastating consequences for the mother, the family and/or the baby.”

CLIMB OUT OF THE DARKNESS

If you or someone you know is struggling with perinatal mood or anxiety disorders, there is help. You are not alone, and you are not to blame, McInnes and Walker both said.

And with the right treatment, you will recover.

“I can’t imagine there is a woman who has a baby who doesn’t go through some of this,” Walker said.

The support group meets virtually at 10 a.m. on Mondays. A couple’s support group that meets on Thursdays is expected to restart in the fall. Call McInnes at 317-948-7308 for information.

Walker will join other women and families at the Climb Out of the Darkness fundraiser from 11 a.m. to 2 p.m. Aug. 20 at the University Green & Gazebo in the Village of WestClay, Hamilton County.

The free event, organized by the Indiana chapter of Postpartum Support International, includes resource tables, vendors, food, chair massages, a mini yoga session and children’s activities.

Walker looks at her two boys today and counts her blessings, even as she notes their personality differences. Mason is more anxious, more in tune with his and others’ emotions, and has a heart of gold, she said, while Rylan is rambunctious, doesn’t know a stranger, and is fearless and strong-willed.

“With Mason, I was scared to reach out … and with Rylan, I had all this new information,” she said.

“It was like night and day, even through the pandemic. When it hit, I thought, ‘Well, I’m not gonna make it.’ And I did.”

Photos submitted and by Courtney Galvan

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https://www.rileychildrens.org/connections/junior-waits-for-a-second-hero-heart Junior waits for a second hero heart 2022-08-03T09:02:00-04:00 2022-08-03T17:03:56-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

They’ve been here before.

Spending long days and nights at Riley Hospital for Children, waiting for answers, for good news, for the time when doctors say they can take their little boy home.

Brian and Mallory Aylor are back at Riley with their son, Junior. And once again, they are praying for a miracle.

A miracle in the form of a heart.

Last year, Junior received a donor heart just before his first birthday. Diagnosed with multiple serious heart defects before birth, including hypoplastic right heart syndrome, tricuspid atresia and transposition of the great arteries, he was a warrior from the beginning.

He spent more than half of his first year of life at Riley but went home healthy and happy just weeks after his heart transplant in May 2021.

It was a joyous celebration, coinciding with his first birthday and the start of the southern Indiana family’s new normal.

“He did amazing after he got this heart,” said his mom from his bedside Monday.

For one year and three weeks, he did amazing.

As happens with organ transplants sometimes, Junior’s donor heart began showing signs of rejection at the end of May 2022.

He has been back at Riley for nine weeks now, marking his second birthday in the hospital, as doctors tried to strengthen his hero heart. But on July 26, the decision was made to place Junior back on the transplant list.

“He just can’t function at the level he needs to with this heart,” Mallory said.

So as his care team, which includes cardiologist Dr. John Parent and surgeon Dr. Mark Turrentine, works to secure a good match for the 2-year-old, his parents wait and pray.

Junior’s blood type is 0 negative, which makes him harder to match, his mom said, and the transplant team will need to be “really picky” with a second donor heart after his body rejected this one.

To buy time, surgeons will take Junior back to the operating room Thursday to implant a ventricular assist device (also known as a Berlin Heart) to manage his condition until a new heart is secured.

The little boy with the big brown eyes doesn’t really understand any of this, of course. He just knows that he’s not home with his big sister, and he can’t run and play for now.

Junior gets physical and occupational therapy six times a week to try to restore the muscle mass he has lost since re-entering the hospital. His head control is improving, and he is trying to sit up without assistance.

“We’re hitting all the milestones all over again,” Mallory said. “It’s good to see. He’s able to grasp things and he’s getting more and more motion every day. During therapy, we see a glimmer of where he was before and those give you glimpses of hope for what is to come when we get out of here.”

Junior’s family and his care team celebrate all those milestones, no matter how small. Whether it’s seeing him shake a maraca, sit up or play with a toy, it’s a big deal.

“People might think the ICU is doom and gloom,” Mallory said. “But we try to keep it really light and positive in Junior’s room. I make him laugh every single day, even if I have to jump around and act like a fool.”

For a young man of few words, he says a lot – whether through his eyes or sign language.

“He speaks through his expressions,” his mom said. “Even before we got here, he had delayed expressive language, so we incorporated some signs so we could communicate with him, and he hasn’t lost that at all.”

Junior is beloved by the Heart Center team, and he loves them right back, greeting them when they poke their heads inside his door each day.

For now, Mallory and Brian know their son is where he needs to be, and they are strengthened by the love and support they receive from friends, family and strangers. All they ask for are prayers.

“I got to pick Junior up and hold him today,” Mallory said. “I was able to just look at him and know that it’s all gonna be OK.”

That’s the power of hope and prayer.

Previous stories:

Junior gets a new heart weeks before his first birthday - Brian and Mallory Aylor’s son was born with multiple heart defects. He has been hospitalized at Riley for 7 months.

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https://www.rileychildrens.org/connections/podcast-maternity-matters---what-to-expect-during-the-20-week-ultrasound PODCAST: Maternity Matters - What to expect during the 20-week ultrasound 2022-08-01T12:58:00-04:00 2022-08-01T13:01:23-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/team-members-are-the-face-of-rileys-cleft-and-craniofacial-program Team members are the face of Riley’s Cleft and Craniofacial Program 2022-07-26T12:33:00-04:00 2022-07-26T13:01:05-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

When Caitlin Church greets a new patient in the Cleft and Craniofacial Department at Riley Hospital for Children, she knows she can relate on a personal level to many patients.

The same can be said for Jodie Skinner, Cara Drake-Luecking and Ellen Randall.

Four Riley team members, four unique stories related to cleft lip and palate. Each part of the cleft and craniofacial team, and all using their experiences and their expertise to provide compassionate care to patients and their families.

July is National Cleft and Craniofacial Awareness & Prevention Month, a time to raise awareness of a congenital condition known as cleft lip and palate. Cleft lip is an opening in the upper lip; cleft palate is an opening in the roof of the mouth. Children can be born with one or both of these conditions, which occur jointly in about 1 in every 1,600 births.

Caitlin Church, coordinator of Riley’s Cleft and Craniofacial Program for the past seven years, was born with both conditions, as well as craniosynostosis, a birth defect in which the bones in her skull joined together too early, resulting in a misshapen head.

She had so many surgeries at Riley over the years her parents joke today that they could still drive to Riley from their Warsaw, Indiana home in their sleep.

CAMP ABOUT FACE

Church, who now lives in Brownsburg with her husband, Ben, and their dog, Lady, remained involved with Riley as a camper with Camp About Face, then moved into a mentor role at the annual camp, which has been paused for the past three summers due to Covid-19.

Landing the coordinator position at Riley was a dream come true, and being able to work with patients and families who are traveling a road similar to hers brings her true satisfaction.

“It’s important for us to show families what it looks like – in my case 30- some years down the road – after you’ve had your cleft lip and cleft palate repaired, that you can have a successful and great life,” she said.

But she understands how overwhelming it can be at the beginning. She may not have memories as a baby, but her parents sure do. It’s hard to see your child go through multiple surgeries, in addition to intense speech and feeding therapy.

That’s why she loves Camp About Face so much and why it pains her that kids have not been able to gather for the weeklong overnight camp at Bradford Woods for three years now.

WALK ALONGSIDE PARENTS

“For me, it’s important to give kids the same experience I had with camp. It was a great influence in my life,” she said. “For team members who are parents, it’s important to them that they can be there for other parents to walk alongside them. It’s powerful to have somebody walk that with you who has already been down that path before.”

Someone like Cara Drake-Luecking, whose husband, Eric, and son, Miles, both were born with cleft lip and cleft palate. The Center Grove couple’s 13-year-old daughter does not have the condition.

The speech pathologist met her husband-to-be at Camp About Face when she was working there during grad school and he was volunteering. She has worked at Riley for 16 years, most of that time with cleft patients.

Speech pathology is critical in patients’ care, she said, focusing on not just speech and language development, but also feeding and swallowing.

When Miles was born 10 years ago, Drake-Luecking had a definite advantage.

“I knew the doctors and nurses well. And my expertise in feeding and swallowing was definitely a benefit in the first several years of his life, as well as my connections with people who could help us.”

Being able to call co-workers for advice late at night when she was worried about her son was a blessing. He had three surgeries in his first year of life.

“I think about that when I’m working with families, and I try to make sure they’re doing OK.”

GRATEFUL FOR CARE

As Miles has gotten older, her husband has been a great resource for both her and their son, specifically when it comes to navigating school, peers and future surgeries.

“We are incredibly grateful for the team of doctors and nurses, dietitians, feeding specialists, the entire craniofacial team,” said Drake-Luecking, who primarily works with patients in the NICU.

Among Miles’ care team are surgeon Dr. Sunil Tholpady and orthodontist Dr. Tasha Hall.

“When I was pregnant with Miles, people would say, ‘he’ll have surgery and then he’ll be fine.’ What they don’t see is that cleft care extends into early adulthood,” she said. “So having a team we can go to at any point in his life and say these are our concerns, and knowing we have a surgeon who will take the time to sit down with us and review options is encouraging.

“It can be scary having a kid with a cleft,” she added. “Knowing you have that support system in place makes things a little less scary.”

Miles, who is headed into fourth grade, has what his mom calls a BIG personality. She and her husband were as disappointed as Miles was when Camp About Face had to be canceled for the third year due to a Covid outbreak.

“You never have to guess how Miles is feeling,” she laughed, describing him as “incredibly loving and empathetic” and a jokester.

SURPRISE DIAGNOSIS

Jodie Skinner, nurse coordinator on the cleft and craniofacial team, also has a 10-year-old son who was born with a cleft lip and palate. Her third child was supposed to be the easy one, the experienced mom and nurse thought.

The diagnosis at her 20-week ultrasound came out of nowhere.

The family lived in Ohio at the time, so Skinner got busy researching medical care for her youngest, Luke. She found an excellent program at an Ohio children’s hospital, where Luke had multiple surgeries.

Since moving to Indiana, she has been looking for an opportunity to give back some of what she has been given over the years – knowledge, care and compassion. She found that opportunity a few months ago when a position opened on Riley’s cleft and craniofacial team.

“It’s a job but also a passion,” she said. “It’s been my world, so walking in those clinic doors, it’s kind of like a second home.”

Skinner says she sees her experience and that of others on the team as added value for patients and families.

“I really understand how hard it is to go through all those surgeries,” she said, adding that she has shared a bit of her personal story with a few parents as a way to encourage them.

“I was in their shoes 10 years ago. The first year tends to be the hardest. It does get easier, but at that moment it can be very stressful, and there are lots of obstacles to overcome.”

MISSION IS PERSONAL

Every patient and every family’s journey is different, of course, something Ellen Randall keeps in mind as a physician assistant on the craniofacial plastic surgery team.

She was born with cleft lip only, which required less surgical intervention than patients with cleft lip and palate. She was treated at Riley in the 1990s, she said, and believes her exposure to plastic surgery as a child influenced her to go down a similar career path.

While she occasionally shares her personal story with parents, “I’ve learned from working here that I need to be mindful about what my cleft story looks like compared to other patients,” she said, adding that she was fortunate to have needed just three surgeries.

Still, she said, “I think it’s helpful for parents to see people like their children represented on their healthcare team.”

That’s exactly why Church is proud that the Riley Cleft and Craniofacial Department has so many team members personally affected by cleft.

“We can definitely turn our life experiences into something really positive. It personalizes our mission of providing great care to our families.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/podcast-maternity-matters-physical-and-occupational-therapy-for-maternity-patients PODCAST: Maternity Matters - Physical and occupational therapy for maternity patients 2022-07-26T09:23:00-04:00 2022-07-26T09:26:41-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/her-heart-baby-is-ready-for-kindergarten Her heart baby is ready for kindergarten 2022-07-25T17:25:00-04:00 2022-07-26T08:28:43-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

When Amy Collins was expecting her fourth child, she figured she knew what to expect. After all, she had plenty of experience.

But little Ellie Collins had other plans.

Amy Collins’ 18-week ultrasound seemed to go OK, but doctors wanted to get a closer look, so they sent her to the maternal fetal medicine team at IU Health North Hospital for a fetal echocardiogram.

Doctors told Collins and her husband that their daughter might have a hole in her heart, but they wouldn’t know for sure until she was born.

“I was 43 when I had her, so I was a little high-risk,” said Collins, who works as a supervisor in histology within the Pathology and Lab Services Department at IU Health.

Still, she refused to obsess about the potential problem, preferring to focus on carrying her precious baby to term and delivering her safely.

At about 37 weeks, tests showed that Ellie had stopped growing, so Collins’ medical team didn’t want to wait any longer. They scheduled Collins to be induced four days later at IU North.

“I called my husband and said, ‘We’re going to have a baby – next week.’”

They knew Ellie would be small, and she was – 4 pounds, 11 ounces – but she looked healthy. A neonatologist was standing by to check her out, but it would be hours later when a team of doctors delivered the difficult news.

Ellie had Tetralogy of Fallot, a combination of four heart defects: a ventricular septal defect (often called a hole in the heart), pulmonary stenosis, a misplaced aorta, and a thickened right ventricular wall. All contribute to a lack of oxygen-rich blood flowing through the body.

“Before you get on the Internet and get scared,” she recalled one doctor saying, “it’s a treatable condition. She probably will never be an Olympic swimmer, but she should have a long and good life.”

Ellie spent a week in the NICU, mostly for observation, then went home.

That was almost six years ago. And now that little baby is starting kindergarten this week, thanks to the care of Riley Children’s Health cardiologist Dr. Eric Ebenroth and heart surgeon Dr. Mark Turrentine and his team, who performed corrective surgery on Ellie when she turned a year old.

It hasn’t been easy, Collins said, particularly when Ellie was a baby and struggled to eat and sleep.

“One of the biggest problems with heart babies is that they are too tired to eat because their heart isn’t working correctly,” she said. “She wouldn’t nurse – I had nursed my other three – but she was just too tired. So I pumped for her for over a year.”

Thankfully, Ellie didn’t need much in the way of medical intervention until she began having “tet spells,” where her lips, hands and feet would turn blue. Collins and her husband knew to “squish” their little girl to get the blood flowing better in those moments.

They knew surgery was in her future near her first birthday, but she needed to weigh at least 15 pounds, Collins said. Ellie weighed 16 pounds by the time she turned 1, and she had surgery at Riley within days of her first birthday.

“She was very somber the morning of her surgery, almost like she knew something was going on,” Collins said. “I wished I could have the surgery for her.”

But Ellie was sitting up and smiling by the second day after the open-heart surgery, despite the bandages on her tiny chest. She was out of the hospital in six days.

Collins acknowledges that she’s been a bit overprotective with her active little girl, especially in the early days.

“It’s like I had never been a mom before because she had so many new things I had never dealt with,” she said.

Ellie doesn’t pay much attention to any of it. Even her scar has gone mostly unnoticed, Collins said. She just had her annual echocardiogram and EKG with Dr. Ebenroth and passed with flying colors.

“Until she starts asking questions, she’s a kid like everybody else,” her mom said. “I’m thankful every day that you can look at her and not even know she has a heart condition.

Collins, who earned a biology degree from Indiana University, has learned a lot about congenital heart disease since her daughter’s birth and is active in Mended Little Hearts, where she serves as education coordinator.

The heart community is a close one, she said, and she and other members support each other through challenging diagnoses and treatments. When Collins heard about an adult Riley patient awaiting a heart transplant, she sent him a LEGO kit to replace one he had given to another patient.

That adult patient, Jeff Taber, was touched by her gesture, saying that building the Toyota GR Supra kit helped calm his nerves. Taber received his new heart July 6 and is currently participating in daily outpatient therapy to regain his strength.

Collins is grateful that her daughter has needed only one operation to mend her heart.

“My heart really goes out to the families that have to undergo multiple procedures and the possibility of transplant,” she said. “One was bad enough.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/bloomington-father-of-8-gets-his-new-heart Bloomington father of 8 gets his new heart 2022-07-20T15:16:00-04:00 2022-07-20T15:52:43-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

It was late on the Fourth of July when Jeff and Jenny Taber got the news they had been waiting for, praying for, since January.

There was a heart waiting for the 44-year-old husband and father of eight.

Earlier in the day, Jeff Taber had been surrounded by his wife and children in the teen room at Riley Hospital for Children to celebrate the holiday. It did his old heart good. But getting the call about a new heart later that night would be transformational.

“When we got the call, it was weird,” Taber said. “I kept telling myself this means nothing until they actually see the heart and bring it.”

That’s because Taber had gotten his hopes up once before when doctors thought they had found a good donor match for him. Still, he remained hopeful, trusting in God’s time for the donor heart that would allow him to return to his Bloomington home and his family.

He knew the heart transplant team, which included Drs. Mark Turrentine and Jeremy Herrmann, would need to do another test on the latest donor heart once they secured it, so he tried to keep his emotions in check.

“I was still excited,” he said. “I had to build a small LEGO set just to calm myself down so I could sleep that night.”

If you know anything about Jeff Taber, a congenital heart disease patient who has been treated at Riley since he was young, you know that he is somewhat of a LEGO master. In his six months inpatient at Riley, he has built creation after creation, sharing them with his young friends on the Heart Center at Riley.

When word got out earlier this year that this adult patient in a pediatric hospital loved to build LEGOs, friends and strangers rushed to donate new boxes of the colorful sets.

One of those people was an IU Health team member who has never met Taber but identified with his story as the mother of a heart patient herself.

“I really appreciated it,” he said, adding that he had received an identical one earlier that was a gift from his son, but he had given it to another patient on the floor who needed a pick-me-up. “I was very happy to rebuild that one.”

Taber underwent transplant surgery July 6 (the day before his son’s birthday). Today marks two weeks since the operation, and Taber said he’s feeling good.

“I’m not quite ready to rock yet, but I am ready to rock on out of here!”

From his mouth to God’s ears.

Today, he received another dose of good news. He is being discharged from the hospital to spend the next four weeks at the Ronald McDonald House while he participates in daily cardiac rehab at COLTT (Center of Life for Thoracic Transplant) at IU Health Methodist Hospital.

Going home might have to wait for a bit, but it’s a big step forward for a man who says just being home with his family and his little dog Cannoli will be an answer to his prayers.

A chef by training, he is eager to get back into the kitchen. During his stay at Riley, the therapeutic recreation team adapted his therapy to include cooking sessions using an Instant Pot, which helped lift his spirits.

“My kitchen is not grand, but getting back to doing something on my own, without real constraints, will be good,” he said.

Meanwhile, he spent the last few days working on what would be his last LEGO set while at Riley – Optimus Prime.

“It’s appropriate to be my final build because a major plot point of Optimus Prime was that he held a piece in his chest that was the heart and strength of the species,” Taber explained.

“Upon his death, he removed it and ‘donated’ it to another robot. It’s great symbolism for organ donation.”

As he completes this part of his journey, Taber asks for prayers for others who are still waiting for the gift of life, including the young patients he has gotten to know recently.

“It’s just amazing, especially watching the younger ones, just how feisty and strong and positive they are,” he said. “They are going to grow up to be strong people because they’ve had to be so strong here, and I just ask for prayers for their opportunity.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous Stories:

“Chef Jeff” cooks while he waits for a heart - Creative therapy helps this father of eight find joy as he marks months on the cardiac unit.

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https://www.rileychildrens.org/connections/its-never-too-early-to-prevent-poisoning It's Never Too Early to Prevent Poisoning 2022-07-20T12:30:00-04:00 2022-07-20T12:20:41-04:00 In the past 12 months, Riley at IU Health has seen a little over 650 cases of child poisoning. Indiana Poison Center reported that over half of their calls involve children. In 2021, 26,561 total cases of child poisoning were reported. Although that is about 5,000 cases less than 2014, the percent of cases with moderate to major outcomes, such as death, has increased from 3.3% to 5.5%. That 2% is a large number of lives that are majorly affected by poisonings.

Many times, the poisoning is due to over-the-counter or prescription medicines. The poison center also deals with poisonings that involve carbon monoxide, insecticides, industrial solvents and cleaners.

“The most common medicines children take are over-the-counter pain medicines such as acetaminophen, however vitamins can also be a danger due to the iron in them,” said Lauren Buenger, PharmD, and ER clinical pharmacist at Riley at IU Health.

The most common way children get into medicine is when it is not kept locked up, or when it is left in a purse or bag that is out of reach. A significant percentage also occurs when the child gets into a pill minder or organizer from a parent, sibling, or other relative. that is usually securely stored or lockable.

“A peak time for these types of poisonings is during travel times, such as during the summer or around the holidays. Many times, when relatives or friends come to visit, they may have medicines with them in their purse or suitcase and that can be a danger,” said Deirdre George Davis, MPH, Coordinator – Poison Prevention, Indiana Poison Center at IU Health Methodist Hospital. “Another potential hazard is when families travel to other houses that are not childproofed, such as a relative’s home.”

Access is the No. 1 way to prevent exposure. Doing whatever you can to prevent access is very important. Keeping medicines on a high shelf is not enough.

“We recommend keeping medicine in a box, such as a tackle box, with a combination lock on it,” said George Davis. “That is the safest way to keep it out of children’s hands.”

If you suspect a child has ingested medicine or other poison, the first thing you should do is call the Indiana Poison Center at 800.222.1222. If the child is unconscious or not breathing, call 9-1-1 immediately. “The Poison Center has experts who deal with this on a daily basis, and they have protocols based on which medicine was taken and how much the child weighs, for example,” said George Davis. “Many times, the child can be treated at home, with the advice from the poison control center.”

“If the Poison Center directs you to take your child to the ER, they will communicate with the ER and let them know what to expect and to provide any information that may help your child,” said Blake Froberg, MD, medical toxicologist and pediatric hospitalist at Riley at IU Health.

So how can you help ensure that your child won’t end up in the ER for poisoning? The following tips will keep children safe and help prevent an accidental overdose:

  • Keep all medicines in the home locked in a box with a combination lock.
  • Keep all medicine in its original container.
  • Avoid taking a pill in front of a child and never tell a child that medicine is candy.
  • Know what is in a purse or bag and never leave items unattended when children are in the home.
  • Know how much of your personal medication is left and how many doses you have taken from a container, so that if a child does take some you have a better idea of how many might have been ingested.

Adult medicines are not the only danger. Be sure your child receives the correct dosage of their own medicine as well.

“Talk to your pharmacist if you have questions about the dosing and ask for a dosing spoon to be sure you are giving precise amounts,” said Buenger.

Your pharmacist can also tell you how to correctly dispose of old, unused medicine. There are many ways to correctly dispose of medication. Michael McGregory also noted that Riley at IU Health has a take back box now where individuals can dispose of unused prescription medicines in their outpatient lobby. The United States Drug Enforcement Administration, DEA, has twice a year medication take-back days, and some police stations will also accept medications for destruction. At any of these sites, any medications, not just controlled substances, can be dropped off.

Additionally, “National Pharmacy Week — October 19-25 — is a good time to review poison prevention and clean out your own medicine cabinet, ensuring that your home is a safe place for children,” said Michael McGregory, PharmD, MBA, Director of Pharmacy at Riley at IU Health.

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https://www.rileychildrens.org/connections/mav-was-such-a-light-to-everybody “Mav was such a light to everybody” 2022-07-14T09:04:00-04:00 2022-07-14T09:15:31-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Maverick Stump had a way of lighting up the world around him.

He didn’t need words to show his love.

He had that grin.

And those expressive eyebrows.

Mav, who captured the hearts of all who knew him and many who didn’t, passed away over the Fourth of July weekend. For his family, the fireworks in the night sky were a reminder of his bright light.

The 4-year-old underwent a multi-organ transplant in December and struggled to recover. IU Health transplant surgeon Dr. Richard Mangus performed the operation to replace the boy’s stomach, pancreas, liver, and small and large intestines.

It was his last, best chance to live.

And it was the right decision, say his parents, Amber and Ray, who watched as their son dealt with serious digestive disorders for years.

“His gut didn’t work at all,” Amber said. “It started off with his stomach and got to where his intestines didn’t work either. He was having a lot of line infections from being on TPN (tube feedings) at home, and so we were running out of access.”

The transplanted organs never quite felt at home in Maverick’s body, despite doctors’ best efforts to keep them functioning.

Maverick’s transplant was a challenge to begin with because he was already “very, very ill,” Dr. Mangus said in an earlier interview. “Basically, all of medicine has failed to fix the problem to the point where the only way to keep him alive is to transplant multiple organs simultaneously.”

“Surgery gave him his best shot, and I don’t regret it,” Amber said this week, a few days after laying her son to rest.

“We would have done anything to save him. And the doctors and nurses and therapists and everybody involved – we all tried so hard. Mav tried so hard. We said if he was tired and worn out, when he was ready, he could go.”

Maverick, who spent much of the past seven months at Riley Hospital for Children, went home on palliative care in May. Team members in the PICU lined the hallway to say goodbye to the longtime patient, marking his discharge with music, noisemakers, cheers and a few tears.

He returned to Riley again in June, then went home on hospice care. He passed away July 3.

The sloth-loving boy was beloved at Riley. Known as the PICU mascot, he enjoyed nothing better than riding through the halls of Riley in his little car or a Riley wagon.

He was a social butterfly, giving “knucks” to anyone and everyone he could.

And there was always that grin.

“Mav was such a light to everybody,” his mom said. “He had a smile on his face every single day and didn’t meet a stranger. He just loved everybody. I hope that we all can learn a little something from him. Even on the roughest days he kept a smile on his face, and we should too.”

That’s more than one can expect from a grieving mom, but she is giving it her best – if only to honor her son.

“It hurts so bad, and I feel so empty inside, but I know he wouldn’t want me to sit here crying and not getting out of bed.”

The Mount Washington, Kentucky family, which also includes Mav’s big sister, Ema, were surrounded by love and light as they laid him to rest in a cemetery near their home on Saturday.

A large contingent of Riley team members came to celebrate his life, along with other friends and family. Among the posters put together for the service was a large display of photos of Maverick’s friends at Riley.

“We feel very lucky to have spent the last few months of his life up there with people who loved him so much,” Amber said. “They all truly do love him, and if we couldn’t have been at home, we were in the right place.”

Music therapist Kalin Hagedorn recorded one of Mav’s favorite songs, “You’ve Got a Friend in Me” from the movie “Toy Story,” over the sound of his heartbeat and gave it to the family. They played that recording at the service.

At the graveside, they played his favorite “Lion King” song, “I Just Can’t Wait to be King,” and blew bubbles in the rain. Not long afterward, the sun came out.

“It was so pretty,” Amber said. “We made it as happy as he would have wanted.”

In honor of their little social butterfly, the family planted butterfly bushes in their landscaping Monday, two days after Maverick’s funeral.

“We just love butterflies and I hope these bushes attract all of them,” said Amber, who finds comfort in her faith even as she grieves the loss of her little boy.

“I do believe we will see Maverick again, and I can’t wait for that day.”

Photos submitted and by Savannah Anderson and Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

Mom thanks Riley team and organ donor “for giving our Mav a shot” - After multi-organ transplant, 4-year-old “PICU mascot” has endeared himself to everyone he meets.

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https://www.rileychildrens.org/connections/podcast-maternity-matters-what-is-nec-what-parents-of-premature-babies-should-know PODCAST: Maternity Matters - What is NEC? What parents of premature babies should know 2022-07-13T09:16:00-04:00 2022-07-13T09:19:48-04:00

Listen to more Maternity Matters episodes.

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https://www.rileychildrens.org/connections/her-heart-is-with-her-young-patients Her heart is with her young patients 2022-07-12T10:04:00-04:00 2022-07-13T07:57:25-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Laura Shopp didn’t realize it at first, but so many of her experiences, both personal and professional over the years, have been leading her to Riley Children’s Health.

Dr. Shopp is Riley’s newest preventive cardiologist on the cardiovascular team.

She’s not new to Riley or IU Health. Or Indianapolis for that matter. The native Hoosier, who graduated from Cathedral High School, went to Boston College for her undergrad degree but returned to Indiana for medical school at Indiana University.

She completed her residency in general pediatrics at Riley, followed by four years of fellowship training in cardiology.

In that time, she also got married and had a daughter, Josephine, born just as the pandemic was unfolding in April 2020. Her husband, Jacob, is an emergency medicine physician.

The daughter of two physicians (her mother still practices, while her cardiologist father passed away following a heart attack when his daughter was 14), Dr. Shopp seems born into her current role.

A lover of science, kids, physics and the heart, she put all of that together to figure out her path in life. But not without a little help.

One of the giants in the field of cardiothoracic surgery, Dr. John Brown, helped her secure a summer internship when she was a young medical student. She was in awe then, watching a team of physicians and practitioners in action, and it reaffirmed her choice to specialize in cardiology.

“I spent that summer in the operating room with Dr. Brown. I remember being in the room with all these cardiovascular surgeons, and I was just amazed.”

Now that she has completed her training, she is no less amazed by her colleagues’ passion for medicine and for kids’ health.

“I’m proud that there are so many passionate providers and physicians here,” she said. “They are passionate about keeping kids healthy, giving them a good quality of life and teaching the next generation of doctors. What more important work could you do?”

Working in that environment and seeing the dedication all around her is contagious, she said.

“You want to be just like them.”

Riley’s cardiovascular and heart surgery program is ranked No. 6 in the nation, according to U.S. News & World Report’s latest rankings, so Dr. Shopp said she knew it would be a good fit.

She credits her mentor, Dr. Jacqueline Maiers, with guiding her in her training in preventive cardiology, which focuses on the management of hypertension and abnormal cholesterol.

“Cardiovascular disease is the No. 1 cause of morbidity and mortality in the United States,” she said. “We know that high blood pressure and cholesterol can lead to heart attack and stroke, and there’s a huge proportion of people who go on to develop this disease.”

And evidence suggests these risk factors can be detected in early childhood, she added.

All children should have their cholesterol screened before and after puberty. That’s important because once it is identified, it can be treated, whether that be through medication, lifestyle changes or both.

Genetics can play a role in some patients’ propensity for hypertension, but that doesn’t mean families and caregivers can’t do more to ensure kids grow up as healthy as they can be.

That’s why IU Health and Riley are expanding the cardiology program in Indiana to promote healthier lifestyles for children so they can go on to become healthy adults.

It can be challenging to compete with today’s emphasis on fast food, video games, phones and television for youth, but Dr. Shopp meets patients where they are.

“When I meet a new patient, I will ask what they do after school or what they do for fun,” she said.

If they say they play soccer or swim or spend a lot of time on their phones, she knows where she is starting in terms of helping them.

“It’s important to me that people know there is no judgment when they come in. I never want to take away stuff people love or things they’re good at.”

Rather, it’s all about variety and moderation. That includes diet. And that’s where the entire cardiology team comes into play, particularly dietitians who work with families to support healthy eating.

“Cardiology is very much a team approach,” said Dr. Shopp, who sees a lot of patients with congenital heart defects in clinic each week. “As a field, there is so much to do, from seeing patients to reading ECHOs and EKGs to planning for surgeries. We see a lot of kids.”

And each child deserves the time and care that the whole team brings to bear, she said.

It can be a heavy load for any one person, which is why the young physician takes time to care for herself as well. She practices yoga several times a week, something she started during the pandemic.

She also plays piano, a skill she learned growing up and one she believes sharpened her mind as a child and calms her now as an adult.

“I play piano sometimes at night when Josephine goes to bed and my husband is working the night shift. I’m passionate about music. Medicine is extremely personal for me … but when I play music or do yoga, that’s my time to not think about medicine at all,” she said.

“I think you need that time. It’s really good for me.”

Photos submitted and by Maureen Gilmer, mgilmer1@iuhealth.org

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https://www.rileychildrens.org/connections/leah-faith-shows-us-all-how-to-fight Leah Faith shows us all how to fight 2022-07-07T18:02:00-04:00 2022-07-07T18:17:06-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

At just 3 years old, Leah Faith Soner has spent most of her life fighting a deadly disease.

She doesn’t know any different, really. Hospitals, blood transfusions, chemotherapy, nausea, hair loss. It’s all been part of her story since she was diagnosed with infantile acute lymphoblastic leukemia (ALL) at 7 months old.

That’s a rough diagnosis, as her mom, Tanya Valentin, found out. While ALL is the most common form of childhood cancer, infantile ALL is a different ballgame. It’s rare, can be much more acute and is harder to get into remission.

Leah has already relapsed twice.

“You would think that getting a cancer diagnosis in your child is your worst nightmare, and I thought that there was nothing as bad as getting that news. But I was wrong,” Valentin said. “The news that your child has relapsed is 10 to 20 times worse because you know that with each relapse, the prognosis worsens, and it’s heartbreaking.”

Yet, as Leah’s middle name implies, faith guides this family.

“NEVER LOST HER SMILE”

“She strengthens me,” said Valentin, a nurse herself. “I describe Leah as an 80-year-old woman trapped in a toddler’s body. She’s wise beyond her years. I have honestly seen the Lord’s hand over my child and give him honor and glory for it. Yes, she’s been seriously ill, but she has never lost her smile.”

Leah was diagnosed as a baby in Florida, where treatment began. Her mom, a native of Puerto Rico who had fled to Florida after Hurricane Maria, then moved with her daughter to Kentucky to be closer to family.

Her home hospital is Norton Children's in Louisville, but Leah was referred to Riley Hospital for Children in Indianapolis for specialized CAR T-cell therapy in a trial through CureWorks, a collaborative effort among a handful of top-tier pediatric hospitals, including Riley, to offer better outcomes for kids with the most resistant forms of cancer.

The idea is to wrestle her disease back into remission to prepare her for a stem cell transplant to eradicate the cancer.

Dr. Jodi Skiles, pediatric oncologist and director of stem cell transplant at Riley, has been overseeing Leah’s treatment here, which included CAR T-cell infusion just over a month ago.

“When Leah came to us, she had such significant disease burden that she was on really high doses of narcotics to control her bone pain,” Dr. Skiles said. “Just attempting to move her, she would just cry out in pain.”

But within days of getting her CAR T cells, her disease was coming back under control and Leah’s personality began to shine through.

BACK IN REMISSION

“It’s been really fun to watch her come out of her shell, to go from a kid that literally could not move to a kid that’s active and happy and playing in the park and running and chasing her dog,” Dr. Skiles said. “It’s been lovely to see her come alive.”

The John W. Anderson Foundation, an Indiana-based nonprofit whose work includes supporting scientific and medical research to alleviate suffering particularly in children, has been paying for T-cell collection, the physician explained. The cost is typically $25,000 per patient.

Leah is currently in remission once again, and the plan is for her to go to transplant as a definitive curative therapy, Dr. Skiles said.

Being able to give Leah a therapy that can safely and successfully bridge her to transplant is a big deal, she added. Having the CureWorks study available and being the only site in the Midwest offering it made it easier for Leah to get access to the therapy without having to be too far from home.

“Overall, she has done really well, is thriving and looks amazing now,” Dr. Skiles said.

But another relapse could be waiting, which is why transplant in the next two months is critical, she said.

“Leah looks so good now, but if she switches to the myeloid form of leukemia, we may never be able to get her back into remission, and CAR T-cells are not an option for that type of leukemia,” she said.

“This is our window to go when she looks well and her disease is in remission. If we don’t take that swing right now, we may never get the chance to swing again.”

BE THE MATCH

The family returned to Kentucky just before the July 4th holiday. For Valentin, it will be good to be closer to family while they determine when and where Leah will undergo the stem cell transplant.

While they wait, they hope and pray for a match in the Be the Match donor registry. Valentin is a half-match for her daughter, who is half Puerto Rican and half Dominican. The chances of finding a complete match are slim, but half-matches can be successful.

Another option is a cord blood transplant. Umbilical cord blood is taken from a healthy baby after the cord to the placenta is clamped. The blood that is in that portion of the cord has stem cells in it, Dr. Skiles explained. Often, mothers will donate cord blood to a public cord blood bank.

Meanwhile, Valentin, her sister and others have held Be the Match drives in Florida, Kentucky and Puerto Rico to boost Leah’s chances of finding a better match, but Valentin is ready to be the donor if that is the best option.

She describes her daughter as “full of life, very energetic, happy, smart and spontaneous.” She loves Dora, baby-signing DVDs, books and the Bible.

And Leah adores her little Labradoodle, Toby, a gift from a breeder in Puerto Rico. The two are inseparable, Valentin said.

She is grateful to everyone who has been a part of her daughter’s story, who has registered on her behalf, shared her story, prayed for her or helped in any way.

“Please remember if it’s not for Leah, it’s for someone else in need. I didn’t know about Be the Match until I needed it, but it’s a blessing how easy you can actually save a life.”

Find out more at https://bethematch.org.

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https://www.rileychildrens.org/connections/tiny-nuggets-are-all-superheroes “Tiny nuggets are all superheroes” 2022-07-07T08:04:00-04:00 2022-07-07T08:25:31-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

From the time she was in middle school, Kendall Tankersley knew she wanted to be a nurse.

Two of her aunts were nurses, and she looked up to them. She also saw the way the nurses in the cancer unit at IU Health Ball Memorial Hospital tenderly cared for her father while she was in high school.

“I think that experience reaffirmed nursing in general for me. I knew I wanted to be like these amazing people and give back to other families what they’ve given to us,” she said.

But it took the experience of a cousin whose baby boy was in the NICU at Ball to steer Tankersley to the kind of nursing she was meant to do.

“There was just something very special in that room,” she said about the open-concept neonatal intensive care unit she visited when she was in college at Ball State University.

Riley Children’s Health was on her radar from that point on. She scoured job postings during her last year of nursing school while she worked as a tech in the emergency department at Ball Hospital. She was thrilled to find a job listing for the NICU at Riley in Indianapolis, even though she was several months away from graduating.

Her professors suggested it might be too early to apply, but she couldn’t wait. She had to try.

Today, after four years as a NICU nurse at Riley Hospital for Children in Indianapolis, she can honestly say that caring for the tiniest, sickest babies is and will continue to be her passion.

“A dream job” is how she described it recently as she was caring for tiny Everly Staup, who has been in the Riley NICU since March. “It’s always a good day when I get to hang out with Everly.”

Tankersley said she is drawn to “these tiny nuggets” for a simple reason.

“They’re all just little superheroes; they’re all so amazing,” she said.

Even the hard days are rewarding.

“Some people think you get to play with babies all day. I don’t think a lot of people realize the sickness that we deal with and how difficult it is and how heartbreaking it can be, but it’s also just so rewarding,” she said.

“A lot of days you want to cry on the way home, but you also have those days that you realize, ‘I did something good,’ or you have a patient discharged after months. All the hard days are worth it in the end.”

As a nurse at Riley, Tankersley doesn’t just care for the babies, she takes care of their families as well, encouraging parents and relatives to leave the hospital when they can to recharge.

“Fresh air does wonders when you’re stuck in here. The walls can close in on you, so just getting sunshine and fresh air, even if it’s just for a walk, can make a huge difference,” she said.

Married almost three years, she and high school sweetheart Matthias love running together, riding bikes and going to concerts. And they adore their “kids” – a three-legged English bulldog named Penny that they rescued in Cincinnati and a little shelter mutt named Louie who keeps Penny company.

Just like her husband and pups help restore her at home, her Riley team keeps her sharp and cared for at work.

“I could not get through the day without my co-workers. We have such a great team on that NICU. I learn something new every day, and I feel like I work with probably the best nurses in the world.”

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Join our team. At Indiana University Health and Riley Children’s Health, you can grow your career while making a positive difference in patients' lives. For a full list of open roles visit RileyChildrens.org/careers.

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https://www.rileychildrens.org/connections/rare-disorder-threatened-to-paralyze-their-little-boy Rare disorder threatened to paralyze their little boy 2022-06-30T13:07:00-04:00 2022-06-30T13:25:50-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Silas Overpeck is an active, fearless 3-year-old. So, when he started complaining of pain in his legs and began stumbling when he walked, his parents noticed.

It all started with a high fever of 103 in late May, but within a day he was better. Or so Jenna and Michael Overpeck thought.

A few days later, Silas woke up with leg pain. They gave him ibuprofen and massaged his legs, and he was fine the next day. But the pain persisted, often at night through the week.

“His legs would hurt, but he would play hard,” Jenna said. “It wasn’t slowing him down until the end of the week and he wasn’t wanting to eat.”

A visit to the pediatrician yielded concern but little clarity. In fact, Silas was doing ninja kicks in the doctor’s office, his mom said. But when Silas began tripping and falling at home, his parents brought him to the emergency department at Riley Hospital for Children.

After tests for flu, COVID and other abnormalities came back clear, physicians began to suspect Guillain-Barre Syndrome, a rare disorder in which the body’s immune system attacks the nerves. Weakness and tingling in the hands and feet are usually the first symptoms. These sensations can spread quickly, eventually paralyzing the body.

The condition is believed to be triggered by an acute bacterial or viral infection.

Jenna, an ICU nurse at IU Health Methodist Hospital for 10 years before stepping back with the birth of her third child, has seen Guillain-Barre before, but never in someone so young.

Several doctors collaborated on Silas’ care, including Dr. Jodie Meara, Dr. Sam Williams and Dr. Laurence Walsh, and when tests revealed the likely cause, IVIG (intravenous immune globulin) treatment was started within hours.

Silas began responding to treatment quickly, and five days later he was back home in Center Grove with his parents and two siblings.

“He’s always been go, go, go,” Jenna said. “He wants to do it all. Doctors told us we’d have to watch him on the stairs and on his bike because he was still wobbly.”

While a teenager or adult would know what their body had just gone through and understand their limits, Silas doesn’t make that connection, she said.

“He may think, ‘Well, I’m wobbly, but I’m going to keep up with my big sister.’”

Silas goes to physical therapy near his home twice a week and is doing well, just a few weeks after his hospitalization, his mom said. She credits Riley’s quick action for her son’s near-complete recovery.

“If we had gone somewhere else, he might have been sent home when his head CT came back clear. Then he would have gotten progressively worse. But because Riley clinically sees this, I think they were able to respond quickly.”

It wasn’t just the medical care but the compassionate care that Jenna said made a difference. After squeezing Silas into the schedule for an MRI and lumbar puncture, Dr. Meara and her medical fellow sat with Jenna and Michael while their son was undergoing the tests.

“Incredibly kind” is how Jenna described it. “For physicians to sit with us and just comfort us … they took that extra step.”

Even with her nursing background, Jenna said she asked the doctors and nurses to explain things to her again and again.

“They took a lot of time answering our questions. It meant a lot. When you have providers you can trust, it makes a huge difference.”

Jenna knows that her little boy stole some hearts while he was at Riley. She also knows that despite how difficult the ordeal has been, it could have been much worse.

“I would sit in the hospital at night and just think about how everyone here is going through hard things, but there is always hope,” she said. “We are so thankful we had our faith to lean on during this time. It is a part of this journey, too.”

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https://www.rileychildrens.org/connections/moms-share-why-covid-vaccine-is-right-for-their-kids Moms share why COVID vaccine is right for their kids 2022-06-22T18:35:00-04:00 2022-06-23T08:24:31-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Sam Freeze didn’t waste any time getting her two young children vaccinated against COVID-19 this week.

The Indianapolis mom and her husband, Ben, who are both fully vaccinated, had been eagerly anticipating approval of the Pfizer and Moderna vaccines for use in kids 6 months to 5 years.

Because the state’s appointment website has been experiencing problems, Freeze got on the phone and started calling pharmacies around town Tuesday. She found an appointment that day at an independent pharmacy in Castleton for Johanna, 4½, and Henry, 2.

“We’ve been anxiously awaiting this day,” she said. “It’s been a top priority to get our kids vaccinated.”

That’s what Riley pediatrician Dr. Sarah Bosslet likes to hear.

“The daycare closures, the missed work, the amount of anxiety and stress COVID has caused families … to be able to vaccinate these kids and not worry so much in child-care settings and out in public is just huge,” the physician and mother of four said.

CALL 211 TO GET THE SHOT

Currently, she advises parents to call 211 or visit ourshot.in.gov to schedule their child’s vaccine appointment. Riley is operating five vaccine clinics evenings and Saturday mornings on all sides of town. To learn more, click here.

In addition, she said, Riley is ramping up access to the vaccine in pediatrician offices. By July, she said, parents should expect to be able to get their child’s vaccine during a scheduled visit, but for the next couple of weeks they might want to call ahead to find out if it will be available.

While Freeze and her family have so far avoided contracting the virus, they know of more and more people around them who are testing positive.

“We’ve been talking about it to our 4-year-old for a long time,” Freeze said. “We talked about the ‘germies’ and why her school closed. We are up-to-date on all of her other vaccinations, so for her, getting this vaccine was no different. It’s something we’re doing to keep ourselves safe and to help our friends and our community.”

440 YOUNG KIDS HAVE DIED

Dr. Bosslet said some parents are under the misconception that COVID isn’t serious in kids, so they wonder if their child really needs the vaccine.

“The perception early on was that this was a disease of adults, and then the Omicron wave happened,” she said, causing a surge in infections in young people. “It is still really important to get the COVID vaccine for these babies.”

While only about 3% of COVID cases in the United States to date were in kids 6 months to 4 years old, hospitalization and death rates in that group are higher than those for older children, according to CDC data. Since the beginning of the pandemic in 2020, more than 440 children ages 1 to 4 have died from the virus in the U.S.

For Freeze, a genetic counselor who used to work at Riley, helping to educate friends and family about the virus and the vaccine is her passion.

“I feel like I’m that annoying friend who wants to make sure everyone gets the vaccine,” she laughed, adding that she has encouraged people in her friend group to ask questions if they need help sifting through information that in the beginning was coming out fast and furious.

Now that the virus has been around for a while, she said she is most concerned with the long-term effects of COVID, including long COVID in kids and other chronic conditions.

HER FIRST COVID SHOT

The week before the CDC approved use of the low-dose Pfizer and Moderna vaccines in very young children, Katy Key’s daughter, Avery, turned 5 and was eligible to get her first shot in the previously approved 5-11 age group.

In a post on Facebook, Key, who lives in southern Indiana, wrote about how happy her daughter was to get her first COVID vaccine, joining her parents in being protected from serious illness with the disease.

“She was very excited when she got to go and get her own COVID card,” Key said.

“Even when she was 3, she would ask when she could get hers. We had talked about COVID and she kind of knew what it was and how we were trying to keep ourselves and others safe.”

The reason she posted the photo, she said, was to show people that the vaccine shouldn’t be a scary thing.

“The more that people can talk about it and hear others’ accounts, they feel more comfortable,” she said.

Avery, who is going into kindergarten in the fall, cried a few tears when she got the shot but otherwise handled it like a champ, her mom said.

The little girl, who was listening to her mom’s phone conversation Sunday, piped up: “Now it doesn’t hurt anymore, but I did have like a little bruising when they took the Band-Aid off,” she said.

The entire family, which also includes Key’s husband, Jordan, and 7-month-old Teddy, came down with COVID last month, but no one got seriously ill.

Key plans to have her baby boy vaccinated as soon as it Is available in his pediatrician’s office.

PROTECTING THE YOUNGEST

Dr. Bosslet said there is no reason to wait to get vaccinated after having the virus, as long as you no longer have symptoms, and it can be given at the same time as other childhood vaccines.

“The COVID vaccine alone is very good at keeping you out of the hospital and preventing long-term complications and death,” she said. “If you’ve had COVID infection and then you get the vaccine, your protection is even better.”

With the start of school just around the corner again, it’s more important than ever to get kids protected, she said.

The Moderna vaccine for the youngest kids is a two-shot series given four weeks apart, and the Pfizer vaccine is three shots – two doses three weeks apart and the third at least two months after the second shot.

Studies showed the approved vaccines’ efficacy in reducing symptomatic infection ranged from 37% to 80%.

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https://www.rileychildrens.org/connections/chef-jeff-cooks-while-he-waits-for-a-heart “Chef Jeff” cooks while he waits for a heart 2022-06-22T09:21:00-04:00 2022-06-22T09:33:07-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

He’s not wearing a chef’s hat, and his “kitchen” is an Instant Pot in a hospital teen hangout room, but Jeff Taber is lost in the joys of cooking on a Tuesday afternoon.

Taber, 44, is dicing onions and slicing meat to make beef stroganoff, while therapeutic recreation specialist Mary Myers pinch-hits as his sous-chef-in-training.

It’s all part of Taber’s therapy as he waits for a heart transplant on the third floor of Riley Hospital for Children.

Yes, this married father of eight is surrounded by pediatric patients, but Riley has been a part of his life since birth.

As a congenital heart patient, Taber continues to see doctors at Riley, including cardiologist Dr. Robert Darragh and heart surgeons Dr. Jeremy Herrmann and Dr. Mark Turrentine.

He has been inpatient at Riley since January, waiting for the day when he will match with a donor heart.

A chef by profession who has cooked in many restaurants, owned a bakery and led Ivy Tech-Bloomington’s hospitality culinary arts program, he has missed time in the kitchen during his long days at Riley.

Until now.

ADAPTIVE THERAPY

Myers, whose specialty is adapting patients’ interests and abilities into therapy, knew Taber needed the stimulation of cooking again.

“Cooking has been this guy’s life,” she said. “When I first met him, he said, ‘I want to cook, I want to bake. That’s what I do.’ I see it as a coping skill for him while he’s here. It gives him a lot of pleasure.”

So, she set to work getting the necessary approvals and equipment to allow for this unusual form of therapy. In his first cooking session, he made fajitas. Then he moved on to beef stroganoff. Next, he planned to flex his baking muscles and make small apple pies. All of it created in the Instant Pot.

Why go to the trouble, you might ask?

“I’ve been here since January, and I’ve eaten everything on the cafeteria menu three or four times,” he said. “Mary wanted to help stimulate my appetite and help me do something while I’m here.”

Since Taber arrived at Riley, he has lost weight and muscle mass, not a surprise since he is in heart failure, he said. But he knows that he needs to be in the best shape possible to undergo a transplant.

That’s why his multiple physical, recreational and occupational therapy sessions are so important each week.

“This is another way to help me, a more fun way. I love cooking.”

HIS “LOVE LANGUAGE”

His IV pole gets in the way as he maneuvers around the small space he has to cook in, but he makes it work with Myers’ help.

“Jeff comes from a family of food,” she said. “He’s been a chef, a teacher. It’s his love language.”

And now, he can’t even cook for his family.

The hospital cooking sessions help improve his motivation, keep his physical and cognitive skills sharp (even if his knife isn’t, he laughed), and lift his spirits, she said.

Dr. Herrmann, surgical director of the adult congenital heart program at Riley, is all for this “clever” therapy, especially for someone like Taber, who has been in a holding pattern – away from his family and his normal life – for so long.

“The mental aspect is maybe the most difficult part for these adults,” he said. “This is the first time I’ve heard of such a creative therapy that uses a patient’s professional skills. I think it’s a wonderful idea.”

While timing for a donor match is unpredictable, Taber is optimistic that it will happen soon, and once it does, Dr. Herrmann said the outlook is good.

“He will no longer be dealing with heart failure symptoms, no longer having these physical limitations in so many aspects of his life.”

LEGO MASTER

Before getting the OK to cook with Myers’ help, Taber busied himself with what many might consider child’s play — LEGOs.

He’s surrounded by kids, so why not?

“I’m the unofficial LEGO man on this floor,” he said, noting that having eight kids of his own (ages 17, 15, 13, 12, 11, 9, 7 and 6) has given him a lot of practice over the years.

He has decorated his room with his creations, sometimes putting them up at the nurses’ station. When his kids come to visit from the family’s home in Bloomington, he jokes that the younger ones give him a quick hug, then go play with the LEGOs.

Myers has witnessed the change in Taber since he became more engaged in activities at Riley.

“Just being more physically active has helped him,” she said. “Having fun does great things for us.”

About an hour after last week’s cooking session began, Taber was ready to dig into a piping hot plate of beef stroganoff.

And he was already thinking about what’s next for Chef Jeff. A new recipe maybe? Or even better: a new heart.

In the past three or four years, more than half of the heart transplants at Riley have been done in adults with congenital heart disease, Dr. Herrmann said. Each year, the team transplants three to five adults on average with donor hearts at Riley.

While he operates at Riley and IU Health Methodist, historically it has been deemed easier to keep adult congenital heart patients at Riley because of the proximity to specific expertise on the cardiology side, the surgical side and the anesthesia side, Dr. Herrmann said.

“We view it as a congenital cardiac program, and we want to take care of patients of all age ranges unless there are reasons they absolutely cannot be at a children’s hospital.”

Riley Hospital’s cardiology and heart surgery program is ranked sixth in the nation in U.S. News & World Report’s 2022-23 Best Children’s Hospitals rankings.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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https://www.rileychildrens.org/connections/its-about-doing-the-best-for-our-patients “It’s about doing the best for our patients” 2022-06-22T08:07:00-04:00 2022-06-22T16:38:04-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Joy and sorrow are equally at home some days on 5W at Riley Hospital for Children.

As a nurse for 16 years on the night shift in the hematology-oncology unit, Julia Williamson knows those feelings perhaps better than most.

She holds the stories of loss close to her heart, but it’s the joys that keep her coming back – the joy of learning, of serving and of being part of a team of dedicated caregivers.

“Five West is honestly just a fabulous place to work,” she said. “It’s where I started, and I wouldn’t consider working anywhere else.”

It’s the team support she appreciates so much.

“I would say our teamwork is second to none. No one ever lets anyone else struggle or drown. Everybody jumps in to help.”

NURSING EXCELLENCE

Williamson was honored with the nursing excellence award during the Riley nurse awards ceremony last month.

The award recognizes her “exemplary leadership in advancing patient-centered care through nursing practice, developing innovative solutions and advancing the profession of nursing,” according to the nomination letter.

While working on a cancer unit brings its share of grief, Williamson said she sees a lot more happy moments than sad, especially when kids can ring the bell and leave after their last chemo treatment.

“Those are the moments we like to focus on, but seeing past families who have lost a child come back and tell us how we helped them through it is what keeps us going.”

She carries the memories of those patients with her. They remind her why she does the work she does.

Because she’s been on the unit for 16 years, she also gets to see things come full circle more and more. She hears about former patients who are now getting married and having kids. Seeing that the care she and her colleagues gave helped get them to that point is something she likes to remember on hard days.

In fact, one of her close friends was a patient at Riley many years ago and is now a nurse herself.

“When I’m taking care of patients, it crosses my mind that years from now they are going to be in someone else’s life because of the care our unit gave,” she said.

“IN THE RIGHT PLACE”

Williamson remembers her first time on the unit when she came to shadow another nurse.

“I remember everything about that day, down to the scrubs I had on. I think I still have those scrubs in the attic. I knew from the first day that I was in the right place.”

She started out as a new grad working nights and has kept that shift, despite opportunities to move to days, because it works out well with her family’s schedule.

Her husband, Andrew, works days, and their two sons, ages 5 and 8, have busy schedules of their own.

“I am a full-on boy mom,” she laughed. “We spend a lot of time on the soccer field.”

You can often find her still in her scrubs walking onto the soccer field for an early morning Saturday match. She usually works Friday nights and gets off just in time to make it to her boys’ games.

Working nights also gives her time to teach and mentor newer nurses, she said, something she has grown to love.

Williamson, who earned her nursing degree from Purdue University and is a loud and proud Boilermaker, is involved in multiple initiatives on 5W in addition to her clinical duties.

She serves on the education committee and the evidence-based practice council. She helped create and co-leads the Cancer and Blood Disorder Center Journal Club, which shares research articles and hosts discussions with fellow nurses to go over best practices.

“It’s about doing the best for our patients,” she said. “Is there something we can learn, something we need to change?

She is also in her second year of Riley’s Distinguished Nurse Program.

GIVING PATIENTS BETTER CARE

Williamson, who says she was afraid of blood as a child, originally went to college to study psychology. But after a while, she realized she liked the more hands-on medical side – anatomy and physiology.

“That part really clicked with me. I like to know how something works, why it works, and how we can make it better. That’s what drives me,” she said.

“I’m a little bit of a running joke on the unit. If someone asks me how to do something, I’m never going to give an answer that will mean less work. It will always be the right way, but it will never be the easy way. There’s always a better way,” she said. “There’s always something more, and our patients deserve that.”

And while she likes to fly under the radar and just do the work, it’s good to be recognized, she said.

“It’s nice to see that what I do and what I’m trying to work on matters.”

Her drive to learn more and do more on behalf of Riley patients and families is what keeps her coming back.

“They are in the hardest moments of their lives, and I’m there to do what I can to make it better. And when I can’t make it better, I’m there to hold their hand,” she said.

“Every nurse on our unit has a strength. Mine is, how can we give patients better care. Our profession is always changing, so we never stop learning. I think that’s one of the things I love best.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Join our team. At Indiana University Health and Riley Children’s Health, you can grow your career while making a positive difference in patients' lives. For a full list of open roles visit Rileychildrens.org/careers.

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https://www.rileychildrens.org/connections/covid-19-vaccine-now-available COVID-19 Vaccine Available for Ages 6 Months and Older 2022-06-20T08:00:00-04:00 2022-08-11T15:57:42-04:00 The COVID-19 vaccine is available to children ages 6 months and older. Children ages 6 to 17 are only eligible for the Pfizer vaccine. Anyone 5 and older who received the Pfizer vaccine at least five months ago is also eligible for a COVID-19 vaccine booster shot.

Latest on Vaccines for Children 6 Months to 5 Years Old:

  • Two vaccines were approved for children 6 months to 5 years old, and both are safe and effective:
  • Pfizer’s COVID-19 vaccine for this age group is given in three doses. The first two shots are scheduled 3 weeks apart, with the third dose at least two months later. Each is one-tenth the amount of an adult dose.
  • Moderna’s vaccine is also available for this age group. It is given in two doses spaced about 4 weeks apart.

Moderna COVID-19 vaccine for ages 6 months to 5 years old now available

Many offices are offering the vaccine to current patients who may schedule their vaccine during regular office hours. To learn more, find a list of locations.

Latest on Booster Shots for COVID-19 Vaccine:

  • Anyone 5 and older who received the Pfizer vaccine at least five months ago is eligible for a booster shot. Anyone age 5 to 17 must receive the Pfizer vaccine for their booster shot.

    What You Need to Know About COVID-19 Vaccines:

    • COVID-19 vaccines are safe and effective. All three approved vaccines for adults, including the Pfizer and Moderna vaccine, were effective in helping prevent severe cases of COVID-19. In the expanded clinical trials Pfizer and Moderna conducted for children 6 months and older, the vaccines provided similar protection.
    • The side effects were similar as reported by adults. For adults, common side effects after COVID-19 vaccine include swelling or redness at the injection site, fever, headache, tiredness, muscle pain, chills and nausea. Some people have no side effects. Learn more about what to expect after your COVID-19 vaccine.
    • 12- to 15-year olds will receive the same two-dose vaccine as adults. You need to be available to return to the same location 19-23 days after your first appointment.
    • Younger children will receive smaller doses compared to the vaccines for adults. 5- to 11-year olds who receive the Pfizer vaccine will receive one-third of the dose as the adult vaccine. Pfizer's vaccine for children ages 6 months to 5 years old is one-tenth the size and is given in three doses. Moderna's vaccine for children ages 6 months through 5 years old is one-fourth the size and is given in two doses. The lower doses are proven to produce a strong immune response in children while minimizing the side effects.
    • Getting a COVID-19 vaccine helps protect you and those around you. COVID-19 has not been as serious to children as it has been to adults. However, children are still able to get the virus and also transmit the virus to others. Getting a vaccine helps protect those around you, including older people or those with chronic medical conditions who may be more likely to get a serious case of COVID-19 if they were to catch it.

    Schedule an Appointment

    To schedule an appointment, call 211 or visit ourshot.in.gov. Several COVID-19 vaccine locations also offer walk-in appointments. Visit the website to find walk-in locations near you.

    For more information about COVID-19 vaccines or answers to your questions, visit iuhealth.org/vaccine.

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    https://www.rileychildrens.org/connections/just-call-this-10-year-old-ambassador-ashae Just call this 10-year-old “Ambassador Ashae” 2022-06-19T18:55:00-04:00 2022-06-19T19:06:06-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Last week, Ashae Villafana told her mom she wanted to be a lawyer. The week before that, she considered becoming a police officer. In between, she fantasizes about being a YouTube star.

    But right now, 10-year-old Ashae is an ambassador, specifically an ambassador for sickle cell patients.

    And her message is that kids with sickle cell disease can do and be anything they want.

    Today is World Sickle Cell Day, a day that aligns with Juneteenth on the calendar, commemorating the end of slavery.

    Sickle cell is an inherited blood disorder that causes infections, severe pain and fatigue. Most common in people of African heritage, it afflicts an estimated 70,000 to 100,000 people in the United States.

    Ashae, who moved to Indianapolis two years ago from New York with her mom, Amawi Villafana Williams, was diagnosed with the disease a week after her birth.

    Unbeknownst to Williams, she and Ashae’s father both carried the sickle cell trait. People with sickle cell trait are generally healthy and often do not know they carry it, but two parents who carry the trait have a 25% higher risk of passing sickle cell disease on to their children.

    Fortunately for Ashae, she is under the care of physicians at Riley Children’s Health and the hospital’s Pediatric Sickle Cell Disease and Hemoglobinopathy program.

    “Having a comprehensive sickle cell program that provides multidisciplinary care as well as the co-location of subspecialists alongside hematologists to deliver high-quality, cutting-edge care is what makes our program unique,” said Dr. Seethal Jacob, director of the program.

    Williams said when her job brought her to Indianapolis, she knew that Riley would give her daughter the care she needed. Recently, Ashae was tapped to be the 2022 Youth Ambassador for the Martin Center Sickle Cell Initiative in Indianapolis.

    Martin Center is a human services agency providing programs and services to people battling the effects of sickle cell in the community.

    “I have learned so much about how the disease affects my body and how to treat it,” Ashae said. “As a result, I am not in the hospital as much as I used to be.”

    Ashae sees hematologist Dr. Meghan Drayton Jackson in the Riley Sickle Cell Clinic.

    As an ambassador, the fifth-grader will be the face of the Martin Center Sickle Cell Initiative, her mom said, adding that “she wants to show kids her age that even though they have sickle cell, they can do anything and be anything they want to be.”

    Ashae is still deciding what she wants to be, but nothing holds her back, Williams said. She loves to swim, dance and compose skits for her YouTube channel.

    “She’s very funny. Where she gets her energy, I don’t know, but she is outgoing and loves to try new things.”

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    https://www.rileychildrens.org/connections/riley-earns-national-distinction-from-u-s-news-world-report Riley earns national distinction from U.S. News & World Report 2022-06-14T09:54:00-04:00 2022-06-14T10:36:59-04:00 INDIANAPOLIS - Riley Hospital for Children at IU Health is once again Indiana’s only nationally ranked children’s hospital by U.S. News & World Report, which released the 2022-23 Best Children’s Hospitals rankings today.

    Riley Children’s Health earned national ranking in all ten of the pediatric specialties ranked by U.S. News & World Report. Three of Riley’s specialty programs ranked in the top 10 nationally including Urology at #3, Cardiology and Heart Surgery at #6, and Pulmonology and Lung Surgery at #7.

    Based on a combination of clinical data and reputation among pediatric clinical specialists nationwide, U.S. News & World Report ranked Riley Children’s in the following specialties:

    “Our clinicians at Riley are the best in the business, the U.S. News affirmation confirms what we already knew,” said Dr. Elaine Cox, chief medical officer of Riley Children’s Health. “Our team has overcome immense challenges these past two years during the pandemic. Their continued compassion and expertise are a beacon of hope for our Riley families. We thank our patients and their families for trusting us with their care.”

    “We are honored to once again earn a U.S. News designation as one of the Top Children’s Hospitals in the country. This reaffirms that Riley Children’s is the best hospital in Indiana for Hoosier children for everything from the sniffles to the life-threatening injuries and disease,” said Gil Peri, president of Riley Children’s Health. “Every day our team provides the best care for children, not only to Hoosiers, but for others across the Midwest and the nation. Our team has dedicated their lives to improving child development, health and well-being.”

    U.S. News & World Report introduced the Best Children’s Hospitals rankings in 2007 to help families find the best medical care for their children. The rankings provide detailed information about each hospital’s performance.

    To gather clinical data, U.S. News & World Report surveys hospitals about objective measures such as patient outcomes, including mortality and infection rates, as well as available clinical resources and compliance with best practices. In addition, U.S. News & World Report asks physicians around the country to name up to 10 hospitals in their specialty that provide the best care to patients with serious conditions, without considering location or expense.

    This year’s rankings will be published in the U.S. News & World Report’s “Best Hospitals 2023” guidebook, available mid-September.

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    https://www.rileychildrens.org/connections/iu-health-at-indy-pride Riley at Indy Pride 2022-06-13T15:50:00-04:00 2022-06-13T16:09:42-04:00 IU Health and Riley Children's Health was once again proud to participate in, and support the Indy Pride Parade. This year was a special celebration after a two year in-person absence for the parade due to COVID-19 precautions. Scores of IU Health team members and family members walked in the parade to with hundreds of other participants to celebrate Pride Month.

    Here are some photos from this year's event.

    Check out a special time-lapse of the parade.

    Photos and video by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/mom-shares-grateful-words-for-daughters-care Mom shares grateful words for daughter’s care 2022-06-13T09:31:00-04:00 2022-06-13T09:53:38-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Kristin Cocklin can be forgiven for becoming emotional. After all, her little girl had just graduated from high school, and it was no easy road.

    Chloe Weinberg was born in LaGrange, Indiana, with a congenital heart defect that required multiple surgeries at Riley Hospital for Children, starting when she was just a baby.

    Ultimately, she was diagnosed with CHARGE syndrome, a disorder that affects many areas of the body, including the heart, hearing and overall growth and development.

    She was in and out of the hospital, and over the years, she counted on the care of her heart center team at Riley – a lot of people really – but two names stand out, namely longtime cardiologist Randall Caldwell (now retired) and surgeon Mark Turrentine.

    Cocklin believes she owes her daughter’s life to them. In a message she sent to the two physicians via Riley’s Facebook page, she said this:

    “Hello, I am a mother of a Riley kid! I wanted to say thank you to you both! My daughter Chloe Weinberg is a heart patient. Dr Caldwell, you were her doctor for 18 years … clear up ‘til you retired! You are an amazing person for the fact you would remember who we all were when you would see us down in the cafeteria. You are always in our thoughts and prayers. Because of you, she is graduating high school in June! That is also because of you, Dr Turrentine. If it wasn't for you performing her surgeries, it would be a very different time for us! Thank you from the bottom of my heart! God bless both of you!”

    Chloe is tiny – just 4 feet, 8 inches tall and weighing about 80 pounds. But she stood tall last weekend when she walked across the stage at Northside High School in Fort Wayne to mark the completion of her high school career.

    “She’s been doing amazing, Cocklin said of her daughter, who likes to read and do crafts at home, as well as take care of her baby sister. At school, she loved participating in choir and helping out in the office.

    Now that she has graduated, Chloe hopes to work with her mom at a local nursing home, where she can help residents with activities.

    Whatever the future holds, Cocklin remains ever grateful for the care her daughter received at Riley from the time she was a baby until she turned 18.

    Dr. Turrentine, thank you so much for saving her life. And Dr. Caldwell, thank you so much for all the years you were there for my little girl. If it wasn’t for you finding her heart condition, my baby wouldn’t be here.”

    In a previous interview, Dr. Caldwell, who retired at the end of 2020, said he was overwhelmed by the letters of thanks he received from families over the years.

    “Kids I’ve taken care of in the past are now in their 40s and 50s – you don’t realize what impact you have sometimes,” he said. “But if you do things for the right reasons, it works out well.”

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    https://www.rileychildrens.org/connections/after-organ-donation-were-family-now After organ donation, “we’re family now” 2022-06-08T12:09:00-04:00 2022-06-08T12:29:37-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    The little boy walked up to the man, wrapped his arms around him as far as they would go, and said, “You’ve got my mom’s kidney, so we’re family now.”

    Darry Hood has a hard time telling that story without choking back tears. Here he is, a 78-year-old retired teacher, musician and magician, feeling alive again thanks to the gift of a stranger.

    But they are strangers no longer. Like 10-year-old Owen Dayhoff said, they’re family.

    Owen’s mom, Traci Dayhoff, donated a kidney to Hood in April after she read about him in a Greenfield newspaper article several months ago. At the time, Hood was on the transplant list, but multiple people who had stepped up to try to donate were not good matches.

    Dayhoff, a 39-year-old wife, mother of four and nurse at Riley Hospital for Children, didn’t know Hood but felt called to go through the rigorous screening process to see if she could help him.

    “I just felt I was supposed to try,” she said. “You could tell he had such a good attitude, and he had lived this life that made so many people want to help him but couldn’t for whatever reason.”

    She told her husband, “If this is God’s will for me to do this, then this testing is all going to go through and I’ll be cleared to donate.”

    Hood taught for 42 years at Eastern Hancock High School, retiring in 2009, and played in a band for over four decades, specializing in 1950s and ‘60s rock and roll. He still writes and records music in his home studio.

    He and his wife, Sue, downsized from their home in Knightstown to a condo in Greenfield, where they try to walk a mile every day to stay fit.

    His kidney problems started about eight years ago and progressed to the point where doctors said he needed a transplant. Up until that point, Hood noticed he was a lot more fatigued and had a lot of itching, caused by toxins in his body.

    And now?

    “I feel great. I’ve got a new lease on life, I lost 20 pounds, got my appetite back and sleep well at night. I had no pain when I came home from the hospital.”

    His wife has been his rock throughout the ordeal, he said, while the couple finished up their nightly walk this past weekend.

    Dayhoff, who is back to work at Riley, didn’t know Hood before the transplant but specified that her kidney go to him. She remained anonymous until after the procedure.

    The surgery, which took place at another Indianapolis hospital, went smoothly for both.

    “I feel 100 percent now,” she said. “The process isn’t for the faint of heart, but it’s 100 percent worth it. The fact is that so many people need a kidney and most of us are walking around with an extra.”

    After she and three of her kids met Hood last week, she said, “I feel like I’ve known him my whole life already. He’s just one of those people.”

    The Hoods, who have two adult children and five grandchildren, are already adding events to their calendar. They plan to watch the Dayhoff kids play baseball and other sports this summer.

    Seeing how everything has played out reaffirms the importance of organ donation in Hood’s mind, of course. He and his wife are registered donors on their driver’s licenses. But being a living donor to a complete stranger blows his mind, he said.

    “It just takes my breath away. A gift that can’t be repaid.”

    Like Owen said, they’re family now.

    To find out more about organ donation, visit indianadonornetwork.org

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    https://www.rileychildrens.org/connections/picu-nurse-manager-swaps-jobs-with-riley-president PICU nurse manager swaps jobs with Riley president 2022-06-07T08:00:00-04:00 2022-06-07T09:09:58-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Monday morning looked a little different for Jessalynn Parsley, clinical co-manager of the pediatric intensive care unit at Riley Children’s Health.

    The same could be said for Gil Peri, president of Riley.

    The two swapped jobs for part of the day – Parsley working out of the president’s office and Peri rounding with clinicians on the seventh floor of the hospital after meeting with Parsley’s co-manager, Sheldon Rippee.

    Before you dismiss this as a gimmick, know that both Parsley and Peri took their assignment seriously – mostly.

    “I can’t do my job from my office,” Peri said, as he waited for a set of XL tall scrubs to be delivered to the executive offices so he could at least look the part on the PICU. “I gotta do my job with the team.”

    Before he left Parsley in charge, he joked, “The only thing you can’t do is sell the place.”

    Escorted by PICU shift coordinator Misty Johnson and clinical nurse specialist Tracy Spitzer, Peri said he was looking forward to learning more about the PICU.

    This is the seventh job swap Peri has been part of at Riley since his arrival last summer. It’s an invaluable learning experience, he said.

    “Today, I get to walk in Jessalynn’s shoes, so I can be closer to patients and closer to team members. Meetings are important, but for us to really do our work as leaders, we have to be with our team,” said Peri, who champions the One Team approach as it relates to all things Riley.

    While there is substantial benefit for him, it’s also a chance for team members to talk about “the good, the bad and the ugly,” he said.

    “I come back usually with a whole new perspective on what’s going well, what’s not going well and how we need to focus and support our teams.”

    For Parsley, who submitted her name for job swap consideration during a leadership meeting, it’s an opportunity to see the ins and outs of daily hospital administration.

    “It’s more than my single lens of the pediatric ICU, but that wide view of the whole hospital operation,” she said, casting a glance at a huge whiteboard in the president’s office filled with goals and multiple areas of focus.

    When it comes down to it, she acknowledged, it’s a way for the president of Riley to see her team in action and to appreciate them the way she does.

    “This isn’t about me,” she said. “It’s for my team, and for Gil to get to see the work they do every day. That’s the reason I was willing to put my name out there.”

    As Peri was getting the rundown from Rippee on his agenda for the day and greeting team members on the unit, Parsley was meeting with administrative leaders, including Dr. Brian Wagers, associate chief medical officer for Riley.

    Dr. Wagers presented Parsley with what appeared to be a hospital crisis and talked through next steps in her role as president, including mobilizing a crisis response team, before acknowledging it was just a test – one of many scenarios a hospital administrator might face any day.

    After joking that she might want her old job back, Parsley said the president would pull his team together to respond in an emergency, just like she does with her own team.

    Parsley also got a look at recent supply chain process improvements during a morning tour.

    “It was fun to go down there and be introduced as the president and ask them how we can support them in their job,” she said.

    That’s what Peri was doing as he talked with Rippee about patient volume, staffing and hiring methodology, before getting background from Spitzer on a patient being treated after a serious car accident.

    Peri rounded with a multidisciplinary team of clinicians headed by pediatric intensivist Riad Lutfi as they discussed the patient’s care. Not all of them knew that Riley’s president was listening.

    To a layperson, it was an impressive demonstration of team, excellence, compassion and purpose – the four pillars of IU Health.

    “I wish I had your skills,” Peri told the assembled group after they finished. “Phenomenal job. If that was my child, I’d want you caring for them. I know you do this every day, but it’s simply amazing. From the bottom of my heart, thank you very much.”

    Rippee, who joined Riley a year ago, didn’t miss a chance to brag on the team.

    “I’ve worked in a few different locations in several states, and I will tell you this PICU team is top-notch,” he said. “The best team I’ve ever had the opportunity to work with.”

    As one of its “fearless leaders,” Parsley was recently honored with the 2021 Daisy Nurse Leader Award for “navigating rough waters in the midst of crisis.”

    While she says she doesn’t need the recognition, she appreciates that her team nominated her.

    “What I do and why I come here every day is because of my team – to support them to be able to give the best care to their patients. To have a little recognition to know that they feel that support and are appreciative means the world to me,” she said.

    “We have our challenges, but they make it easy to continue to lead when they’re willing to jump in and try new things. They know they’re here for those patients, to get them through some of the worst and roughest parts of their life.”

    Monday’s job swap ended with lunch, during which Peri and Parsley could honestly say they got a taste of a day in the life of the other.

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    https://www.rileychildrens.org/connections/amazing-ava-waits-for-a-new-heart Amazing Ava waits for a new heart 2022-06-02T07:57:00-04:00 2022-06-02T08:09:32-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    She’s known as #AmazingAva, and when you meet her, you can see why.

    The 8-year-old spitfire holds court in her “apartment” on the heart center at Riley Hospital for Children, sparring with her nurses, dancing to pop music and giving everyone who will listen a rundown on Sonic the Hedgehog and dinosaurs.

    She is seven weeks into her latest stay at Riley, and she knows she is here for the “long haul.”

    Could be weeks, could be months, her mom says.

    “Could be years,” Ava shouts.

    Ava Graham is waiting for a new heart to replace her damaged one.

    The second-grader is a veteran of multiple surgeries, including the three-part series recognized as the most effective at treating her congenital heart defect – hypoplastic left heart syndrome.

    But for Ava, the last in the series – the Fontan – left the then-3½-year-old with airway complications that required her to get a trach to help her breathe.

    “So we became trach parents and G-tube parents,” Jami Graham said. “We were 69 days in the hospital that year after the surgery.”

    She was on track to have a procedure done at a Cincinnati hospital to address her airway issues when COVID canceled all elective surgeries in March 2020.

    It wasn’t until spring of 2021 that doctors at the Indianapolis hospital where Ava had been treated for years mentioned the T word – transplant, Jami said.

    “I was there alone. My husband (Jackie) wasn’t with me. I wasn’t expecting even the mention of transplant,” she said.

    But the wheels were set in motion to transfer Ava’s care to Riley, which is well-known for its expertise in pediatric heart transplant.

    That’s when Riley cardiologist Dr. Robert Darragh and transplant coordinator Debbie Murphy stepped into their lives.

    Jami said the Riley team decided it was best to eliminate the trach before transplant due to the risk of infection.

    So, in an effort dubbed Operation Airway, Dr. Bruce Matt performed a major tracheal reconstruction and removed the trach tube last fall.

    Ava, who said she wants to bury her trach tube in a tiny coffin, still has some airway issues – “I snore,” she says – but the team is hoping she can get matched with a heart before they work on her airway again.

    “After transplant, when her body is happier because she has a whole heart, they feel she will recover better from any airway stuff,” Jami said.

    For now, Ava has made her hospital room her home, complete with artwork, posters, pictures, toys, blankets, a Nintendo, iPad and lots of little pairs of slippers.

    Jami spends each day with her little girl, while Jackie comes up after work and spends the night. It was a schedule the couple worked out early in their daughter’s last lengthy stay.

    “We’re lucky we’re local,” she said. “I love the fact that I get to go home at night and come back in the morning. I tried to stay here overnight last fall, and I couldn’t sleep. I was a mess. My husband sent me home. He can sleep standing up.”

    The fact that Ava feels pretty good for now makes the hospital stay easier, her mom said. The two go for walks around the unit, and Ava has made friends with a couple of other patients. She draws and colors, plays games, works with her therapists and watches a lot of movies.

    Asked about the hospital food, Ava says the pizza is “the bomb,” but a jar of Hershey kisses sent by her great aunt is fueling her between meals.

    As she moves around the room, schooling her visitors on her dinosaur collection, nurse Nate May walks in, and Ava gets into her fighting stance.

    “What is this? Attack mode?” He laughs and assumes the same stance. The two look like they are waiting for the opening bell in a wrestling ring.

    “I’m not supposed to fight patients,” he jokes. “Are you having fun trying to be famous?”

    May, a favorite with many of Riley’s heart patients, says Ava is spirited and fun.

    “She loves music. She is jamming out here most days to pop songs, and I love it. I get these obnoxious pop tunes stuck in my head.”

    Together they list some of her favorite artists – Bruno Mars, Taylor Swift, Katy Perry, Maroon 5.

    “Seriously, I love her personality. The first time I had her as a patient, she had a KitKat and a Pepsi for breakfast and she inspired me,” he joked. “I’m like, I’m not doing life right.”

    So the next week, when there was candy on the unit for nurses week, he admitted he had a KitKat and Monster Energy drink for breakfast.

    “Just don’t tell my mom,” he whispered.

    Ava laughed out loud.

    As she watched her daughter and the nurse continue to spar, Jami considered how she will feel when she gets that call that a heart is a match for her little girl.

    “It’s bittersweet really. I want the call to come obviously, because I want to take her home, but when that call does come, it’s gonna be like – oh my gosh, it’s happening.”

    Riley’s cardiology and heart surgery program is ranked fifth best in the nation by U.S. News & World Report. It is the Midwest’s top-ranked hospital for children’s heart care.

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/riley-emergency-nurse-weve-seen-some-bad-things Riley emergency nurse answers the call 2022-06-01T09:01:00-04:00 2022-06-01T09:31:41-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    As a charge nurse in the emergency department at Riley Hospital for Children, Aaron Puntarelli sees more than his share of trauma.

    Car accidents, falls, shootings, stabbings, burns, drownings. And the most horrifying of all – child abuse – or what he and his team refer to as nonaccidental trauma.

    No day is the same, he says, and that keeps him on his toes.

    “Nursing is just what I want to do.”

    His career path wasn’t always that clear. The multi-sport athlete, who grew up on the south side of Indianapolis, was in pre-med at the University of Indianapolis but changed course after graduation.

    He went into teaching and coaching back in his old stomping grounds before the pull of medicine brought him back.

    There was something about nursing – and taking care of kids – that sucked him back in, he said.

    He returned to school, earning his nursing degree from Marian University. During that time, he did his clinical rotations at another hospital, but when it came time to choose the place where he would launch his career, there was no question that it would be Riley.

    It helps that Puntarelli’s wife, Sarah Johnson Puntarelli, works at Riley as rehab services supervisor, but there was something else.

    “GIVES YOU CHILLS”

    “There is just something different when you walk into this hospital,” Puntarelli said. “It kind of gives you chills when you think about it, but you walk in those doors and there’s a different aura here.”

    It extends from the physicians, nurses and clinical staff to support staff and administrators, he said.

    “I can’t explain it,” he said. “We here in the emergency department call it the Riley miracle.”

    Nettie Wilson and Amy Knowles, clinical managers for the ED, say Puntarelli is part of that miracle. They describe him as “a fabulous trauma nurse” and someone who wants to learn as much as he can to better care for patients.

    “We have known him in the role of a student PCA to new graduate nurse to now an experienced nurse, and he has thrived in all roles,” Wilson said. “Aaron is an efficient and reliable charge nurse and an expert in his field.”

    Puntarelli started as a tech in the ED six years ago before being hired on as a nurse.

    “I love kids … and it’s rewarding to treat them and see them get better,” he said.

    TRAUMA TEAM IS READY

    Depending on the severity of their illness or accident, he doesn’t always get to see them beyond the 30 minutes or so that they are in the ED.

    “It’s hard in the ED, after you stabilize a critically ill patient, you don’t get to follow them into surgery or go up onto the floor when they’re admitted,” he said.

    As the state’s only Level 1 pediatric trauma center verified by the American College of Surgeons, Riley receives trauma patients from all over Indiana.

    “If there is a stabbing up in northern Indiana or a horrible pile-up down south, they fly them here,” Puntarelli said. “We’ve seen some bad things.”

    The team immediately springs into action no matter the time of day or night. Pediatric trauma surgeons, as well as specialists in emergency medicine, critical care, radiology and anesthesia, are available in the hospital at all times.

    And in Riley’s family-centered care model, it’s not just the patients who are treated.

    “A lot of our treatment involves the parents,” Puntarelli said. “No parent wants to see their child hurt or sick like that. Part of our job is to console them, give them information and just be with them. I can’t imagine what it would be like to have your kid in a situation like that.”

    BABY ON THE WAY

    Parenthood is on his mind a lot these days, as he and his wife prepare for the birth of their first child – a little boy – in July. The joy and anticipation are written on his face.

    The couple married nearly four years ago under the bright lights of a baseball stadium. They exchanged vows on home plate at Victory Field in Downtown Indianapolis, shared cocktails with guests in the concourse area and held their reception on the Corona Patio.

    Outside of work, Puntarelli likes to do CrossFit at the gym, attend his nieces’ and nephews’ ballgames and spend time with his wife and family.

    “Come July, I’ll have a different sense of what life is like outside work,” he said with a laugh.

    SAFE SLEEP WARNING

    With a baby on the way, he has a message he wants to send to all parents of little ones.

    He has seen heartbreak too many times in the ED when a child is brought in after suffocating as a result of unsafe sleep practices.

    Number 1: Do not sleep with your baby, he says, no matter how tempting it might be after a middle-of-the-night feeding. Number 2: Place the infant on his or her back when it’s time to sleep. Number 3: Keep blankets, pillows, bumper pads and soft toys out of the baby’s bed.

    These practices can help lower the risk of accidental suffocation, sudden infant death syndrome and deaths from unknown causes, according to the Centers for Disease Control.

    “It’s heartbreaking every time,” Puntarelli said, when an unresponsive infant, who appears otherwise healthy, is brought into the ED.

    That and child abuse are among the worst things he sees in his job, sometimes even harder than motor vehicle accidents.

    “We live in the world we live in, and it’s a hard place sometimes. We choose to work here, but sometimes we have to step away for a bit, let someone else take over.”

    CARE EXTENDS TO TEAM

    After every major trauma case, the care team debriefs for a few minutes to go over what went right, what went wrong and how they can do better. But caring for the team members themselves is also key.

    “Our team here is awesome,” Puntarelli said. “We can talk to each other, pick each other up.”

    A hospital chaplain is always available to console families and team members, and the employee assistance plan is another vital resource.

    As charge nurse, Puntarelli is responsible for coordinating care for patients and attending to parents’ needs while his team is actively treating the child.

    Wilson has seen him in action, describing him as a strong leader in his role as charge nurse and in trauma evaluations.

    “He strongly exhibits our value of team in his interactions with his peers and colleagues,” she said. “He is always willing to do what is necessary for the unit and for our patients.”

    That means jumping in to care for the child when appropriate, but he takes seriously his obligation to parents and other caregivers in the moment.

    “I’m trying to keep them informed, whether it’s a resuscitation situation, or if their child is being intubated or headed to surgery. I’m letting them know we’re doing all we can.”

    Adult minds can wander, he said, so keeping them informed is the best thing he can do.

    “That’s what they want – to know we are working our hardest to help save their kid.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/hearing-her-daughter-say-i-love-you-took-her-breath-away Hearing her daughter say “I love you” took her breath away 2022-05-31T10:34:00-04:00 2022-07-22T09:02:04-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Sara Cave almost has no words to explain the change in her daughter.

    That’s because 4-year-old Helen Cave is finally finding her words, and they are music to her mother’s ears.

    As Helen walks into the outpatient rehab space at Riley Hospital for Children, wearing her “Frozen” light-up sandals, her therapist introduces her to some visitors and asks her to tell them how old she is.

    Helen shyly holds up four fingers, then quietly says, “I’m 4.”

    It’s a remarkable change from when she began speech therapy.

    Helen is the fifth of Sara and Eric Cave’s seven children, so when she wasn’t saying typical toddler words at age 2 like “mama,” “dada,” “up” and “ball,” they worried that something wasn’t right.

    “She had no words; everything was ‘du-du-du-du.’ She understood – like when I’d say, ‘Helen, go get your sippie’ – but it was just a lot of pointing,” Sara Cave said. “There was no language developing.”

    Helen was diagnosed with childhood apraxia of speech at about age 2½. Children with the motor speech disorder generally have a good understanding of language and know what they want to say, but they are unable to make their mouth form the words in a way that others understand.

    While apraxia of speech sometimes is the result of stroke or traumatic brain injury in adults and children, Helen suffered neither.

    “Everything but her speech has been completely normal,” Cave said.

    Helen began virtual therapy through an early intervention program in 2020, but it was rough, her mom said.

    “We just knew we needed more help; she was not making progress, so we brought her here.”

    Helen has been coming to Riley in Indianapolis from her home in Columbus since January 2021, just before her third birthday. She sees speech language pathologist Ashley Finch for weekly therapy that combines play with work so seamlessly that Helen doesn’t seem to notice the difference.

    “She’s come a really long way,” the therapist said, as she engaged Helen in repetitive word exercises in a light and playful manner.

    “When we first started, we would begin every session doing just vowels. Her vowels were very distorted in the beginning,” Finch added.

    At the mention of that, she and Helen begin moving their arms like cheerleaders as they practice the vowels A, E, I, O and U.

    It was a long few months in the beginning, Helen’s mom said.

    “Ashley kept saying that it will not always be this hard,” Cave recalled. “But it felt at the time like, ‘Oh my gosh, are we ever going to get there?’”

    And now?

    “Every week I see improvement. She still has quite a ways to go, but when she started, I don’t know that I understood her even as her mother.”

    That was a frustrating feeling for mother and daughter, so Finch quickly began focusing on what she calls high-frequency words that came up every day – words like cup and eat – to help Helen better express herself.

    Patients with the disorder benefit from multiple repetitions and repeated practice of sound sequences, words and phrases during therapy.

    As Helen concentrates on a matching game, Finch asks, “What did you have for lunch today?”

    The little girl first replies, “I don’t know,” then after thinking, she remembers.

    “Noodle soup!”

    It’s a big deal, hearing those words strung together. It’s major progress, and Cave is beyond grateful as she watches the smile spread across her daughter’s face.

    “Ashley has been with us since the beginning, which has been amazing,” Cave said. “She is really good at incorporating play into sessions.”

    As Cave is talking, Finch pushes Helen in a swing while the little girl practices counting – 1, 2, 3 … up to 10. Then it’s time to play a farm game, with Helen identifying the animals she sees.

    The little girl, who loves playing with her siblings, swinging and riding her bike, responds cautiously when Finch scatters animal puzzle pieces on the mat.

    “Tell me what animals you see,” Finch says.

    “I see a chicken,” the little girl replies, followed by “bunny, pig, cow, mouse.” And finally, “a kitty!”

    As they play, Finch pulls out her flash cards and practices another few words with Helen – dice, race, toss, face, mouse, house, kiss. Helen repeats them slowly and carefully.

    Helen, who will start preschool in the fall, also works with a private therapist in Columbus who has consulted with Finch, and she sees a speech therapist through the school system at home in preparation for the start of school.

    While at first she was reluctant to participate in therapy and would try to hide in her mom’s arms, Helen now is actively engaged in her sessions, cheerful and persistent in her efforts to expand her vocabulary.

    “In those early days when there was a lot of resistance, Ashley did a really good job of being firm and having high expectations, but she was so kind,” Cave said. “She worked so hard to find something that would engage Helen.”

    As Finch guides Helen through a small obstacle course, Cave recalls how this activity helped her daughter relax in the beginning.

    “When she first started, the obstacle course was the saving grace. Sometimes I would sit outside the room because she would do better if I wasn’t right here.”

    But now, Helen barely seems to acknowledge her mom’s presence, as she climbs through a tunnel and pops out to practice sentences with Finch: “I like ice cream. I sit on a lap, I have lips.”

    “One thing we are focused on is movement – the way her mouth is moving,” Finch explained. “Apraxia is a motor speech disorder, so treatment looks a little different. We are really focusing on the way her mouth is moving and the planning it takes to form words.”

    Helen is proficient at repeating words, but full sentences can still be a challenge, especially when stringing them together, her mom said. That’s when her intelligible language begins to break down.

    “Typically, we want to see kids around the 80 percent level with intelligibility,” Finch said. “She is doing really well, and we are getting to that sentence level, but there are still situations where you can see that her mouth is not moving in the correct ways.”

    Treatment for apraxia of speech can last for several years. Helen will continue to be assessed until she reaches that 80 percent level, but the past 17 months of regular therapy have made a significant difference, Cave said.

    Just imagine the beauty of hearing your child say “I love you” for the first time.

    Helen couldn’t form those words until she was about 3½, her mom said.

    “It took my breath away the first time she said it, which was when I was tucking her into bed one night. I had waited a long time for that one!”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/infant-formula-shortage-dos-and-donts Infant formula shortage do's and don'ts 2022-05-26T13:44:00-04:00 2022-05-26T13:50:05-04:00

    Related:

    VIDEO: Tips for dealing with the formula shortage - Dr. Emily Scott shares some advice about how to navigate this situation. Additionally, she urges parents to avoid turning to homemade baby formulas that can pose a serious risk to babies.

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    https://www.rileychildrens.org/connections/tips-for-dealing-with-the-formula-shortage Tips for dealing with the formula shortage 2022-05-26T13:23:00-04:00 2022-05-26T13:53:56-04:00 Dr. Scott shares some advice in the video below about how to navigate this situation. Additionally, she urges parents to avoid turning to homemade baby formulas that can pose a serious risk to babies.

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    https://www.rileychildrens.org/connections/kindergartner-celebrates-one-year-with-new-kidney Kindergartner celebrates one year with new kidney 2022-05-23T12:54:00-04:00 2022-05-23T13:05:59-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Scarlet Boetjer celebrated a big anniversary a week ago.

    She’s only 6, so it wasn’t a wedding anniversary or a work milestone.

    Scarlet marked her one-year kidneyversary May 14. And she did it by handing out kidney-shaped cookies to her kindergarten classmates.

    She added an educational component to her party too. Mom Markie Hofmann said Scarlet gave a lesson on kidney transplant to her class, so they could better understand how important organ donation is.

    Born with complex medical problems, including just one working kidney, Scarlet has been followed by Riley Children’s Health since she was a baby.

    After multiple surgeries to deal with digestive issues, Scarlet used a colostomy bag for about a year, but urinary tract infections became a constant battle, and her lone kidney began to die, her mom said.

    When Scarlet was about 3, doctors began to talk about transplant. Little did Scarlet’s parents know that a medical assistant/nursing student working in their pediatrician’s office in Terre Haute, Indiana, was about to give them the most precious gift ever.

    Jenae Kauffman met Scarlet in the doctor’s office and began following the family’s Facebook page, Scarlet Strong. When Hofmann went public with her plea for a kidney for her daughter, she listed her daughter’s blood type and posted the registration paperwork for potential donors on the page.

    A couple of months went by before Kauffman messaged Hofmann out of the blue to tell her she was a match for Scarlet and she wanted to give the little girl one of her kidneys.

    Hofmann was stunned, but grateful.

    “How can I say thank you? You gave my daughter life,” she said.

    A mother to two little girls herself, Kauffman felt called to help this child of a relative stranger. She would like to think someone would do the same for her children if they needed it.

    “I’m a healthy person, and I thought about it a lot,” she said. “It would be nice to help someone out.”

    She advises anyone considering organ donation to do their research, but for her, it all went smoothly. After a three-hour laparoscopic procedure to remove one of her kidneys at IU Health University Hospital, she spent the weekend in the hospital, then recovered well at home, she said.

    And she has resumed her active lifestyle, enjoying hiking and working out. Since her surgery, Kauffman has graduated from nursing school and is working as a nurse in the emergency department at a Terre Haute hospital.

    “A lot of people wait a long time and might not get a kidney,” Kauffman. “It’s just awesome to see Scarlet doing so well.”

    In the year since transplant at Riley, Scarlet has become a whole new kid, her mom said.

    “Her energy level is a thousand times more, she eats more, and she’s just more lively.”

    If there was any doubt, Scarlet proved her mom’s words by cartwheeling up and down the waiting area in the Riley Outpatient Center after a recent appointment. The urostomy bag attached to her hip didn’t even slow her down.

    Scarlet participates in competitive cheer and loves tumbling and drawing, her mom said. She wants to be a doctor when she grows up.

    “For the past year, she’s been saying that. It melts my heart. She wants to be a cheerleader and a doctor.”

    Scarlet sees several specialists at Riley, including Dr. Corina Nailescu in nephrology, Dr. Rosalia Misseri in urology, Dr. Troy Markel for general surgery, Dr. Shamaila Waseem for gastroenterology, and Dr. Laurie Ackerman in neurosurgery.

    “She’s kind of a mystery to all the doctors who see her,” Hofmann said with a laugh. “She does her own thing and doesn’t go according to any doctor’s plan.”

    And that matches her personality 100%, Hofmann said.

    “She’s a little firecracker. She’s the sweetest little thing, but she’s gonna be a wild one.”

    Hofmann said her little girl still has medical procedures ahead, but she hasn’t let any of it slow her down. And her kindergarten classmates and teacher have been wonderful this year.

    “One of my biggest fears as a parent was that she would go to school and be made fun of because she’s not a normal kid. But not once has anyone looked at her wrong. They all love her,” Hofmann said.

    Community support has also been strong for the entire family, she said, which includes Scarlet’s two older brothers, her little sister and her dad, Zach.

    “I’m absolutely grateful for the help we’ve received.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/i-asked-my-mom-if-i-was-going-to-die-she-told-me-im-strong-and-im-brave “I asked my mom if I was going to die. She told me I’m strong and I’m brave” 2022-05-18T13:11:00-04:00 2022-05-18T13:36:43-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    To hear details of the accident might send shivers up your spine.

    A 10-year-old girl was impaled on the rudder of a sailboat when a wave tossed her into the water during her second day at a sailing camp in Bloomington, Indiana.

    She knew she was hurt, yet strangely, she felt no pain, she said. Even though she was an excellent swimmer, it was the life jacket she was wearing that kept her afloat for several minutes until another boat crew rescued her.

    “I knew something was wrong, but I didn’t know if I was going to just need a Band-Aid or surgery.”

    That little girl is now a high school sophomore who lived to tell about that terrifying day on the lake.

    Caroline Pattillo returned to Riley Hospital for Children recently to reunite with Dr. Matt Landman, the trauma surgeon who put her back together after the June 2016 accident.

    “You’ve gotten so tall,” Dr. Landman said to Caroline as he hugged both her and her mother, Kerry Thomson. “I remember meeting you in the emergency department that day. You were really brave.”

    Brave. Caroline’s mom used that same word when talking her daughter through her emergency after Caroline was airlifted to Riley from Bloomington.

    Caroline remembers.

    “I asked my mom if I was going to die. She told me I’m strong and I’m brave and I could get through it. She was by my side the whole time.”

    Dr. Landman, now medical director of trauma at Riley, treats a lot of patients suffering serious injuries due to accidents, violence and child abuse.

    “One of the unique aspects of being a trauma surgeon is you never know what’s going to come in the door,” he said.

    In Caroline’s case, he knew she had been impaled in her pelvic area, and it was clear that she would need surgery, but he and the emergency team had some time first to sort through her injuries.

    They could see the external trauma, but they couldn’t know for sure the extent of her internal injuries without more testing, so they took some time before heading to the operating room.

    “Whenever you have impalement in the pelvis, there are lots of organs, lots of blood vessels you have to worry about,” he said. “Obviously, the major thing you worry about upfront is massive bleeding, but thankfully, we didn’t have that.”

    Seeing Caroline today, healed and thriving, is rewarding for her surgeon. But when she tells him she wants to become a pediatric surgeon like him, he positively beams.

    “It’s incredible to see someone who came in literally broken, now flourishing and planning a career in surgery,” Dr. Landman said. “I couldn’t be happier with the progress she’s made.”

    Not that it was easy. Caroline spent a month at Riley recovering from the physical and emotional wounds she suffered. She remembers the kindness of the team that cared for her, including child life specialist Amanda Banker.

    She continued her recovery at home and is now excelling in school, where she plays volleyball, and is a top fundraiser for Riley Dance Marathon.

    As difficult as it was to see her little girl suffer, Caroline’s mom was confident that, if she survived, she would come out stronger in the end.

    “These are the moments in a child’s life where you can either embrace the learning and pivot the story to be one of resilience, or you can sit with it as a victim and let it be something awful that happened to you,” Thomson said.

    “Caroline has been really incredible from the start at choosing the former, choosing the story of strength and resilience. Part of what has been great about telling her story for Riley is she gets to remember her resilience.”

    And other young people can learn from her experience, she added.

    “I do think it makes an impact for other kids to hear from somebody who appears to have lived a normal, unscathed life – that we all have a story,” Thomson said. “We’ve all been through something, and if you choose to tap your strength and your bravery, you can change it to something that can shape your life in a positive manner.”

    For parents who find themselves racing a helicopter to the Riley emergency department, Thomson said you cannot underestimate the power of your presence and of your messaging to your child in that moment.

    Dr. Landman helped with that as well, she said.

    “The moment I walked into the trauma center, he put his arm around me and said, ‘Hi, I’m Matt. I will be taking care of Caroline.’ He was amazing,” she said, going over test results and walking her through the treatment course they were going to take.

    “We understand that there are a lot of surgeons who don’t have a great bedside manner, so we were grateful for you,” she told the doctor.

    As for her daughter, Thomson shows a fierce sense of pride and looks forward to seeing how she continues to share her gifts.

    “Whether she chooses to be a surgeon or not, I see that she is fed by caring for other humans. She really sees people and knows almost intuitively how to be helpful, so I think whatever she chooses to do in life, she’ll probably find herself in a place where she can continue to help people.”

    Since 1993, Riley Hospital for Children at IU Health has been home to Indiana’s only Level I Pediatric Trauma Center verified by the American College of Surgeons (ACS).

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/two-time-transplant-patient-opens-his-heart-to-love Two-time transplant patient opens his heart to love 2022-05-16T15:40:00-04:00 2022-05-17T07:52:28-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Kobe Brannan has been marking milestones since the day he was born. And Saturday was a big one. Kobe married his longtime sweetheart, Teal Burnett, in Terre Haute, Indiana.

    This celebration was made even sweeter by the fact that Kobe has survived two heart transplants in his 24 years of life.

    So, the young man who is living with his third heart gave it away – metaphorically speaking – to the woman he loves.

    Kobe, born in Terre Haute in 1998, was rushed to Riley Hospital for Children as a baby after tests showed he had multiple heart defects.

    “Parts of my heart weren’t working,” he said. “I was dying.”

    At 7 weeks old, he received his first donor heart, transplanted by Riley surgeon Dr. Mark Turrentine.

    He lived a pretty normal life, he said, playing sports and being a regular kid, until his heart started giving out when he was a teenager. He first noticed it during a basketball camp he was participating in.

    Kobe, named for basketball legend Kobe Bryant, loved the sport but realized he wasn’t as fast as he had been, and he just didn’t feel right.

    His dreams of playing on his high school team were fading.

    After more tests and repeated hospitalizations at Riley, Kobe was again added to the transplant list.

    On Oct. 9, 2014, his mom, Sarah, got the call from Riley transplant coordinator Debbie Murphy that they had a heart for Kobe.

    “It was the middle of the night, and it was so exciting,” Kobe recalled. “It was like I was preparing for a basketball game. I was walking up and down the hallway of the hospital with my headphones on. I was pumped up.”

    But the initial thrill gave way to fear, he said when it was time to go into surgery.

    “I was very scared. I cried, and I remember how cold it was walking back to the operating room. I had to say bye to my parents, not knowing what was going to come next.”

    He remembers child life specialist Jenna Yarnell holding his hand as he went back, bringing him comfort.

    Yarnell remembers that time as well.

    “He is the first patient that I ever had the privilege to support in preparing for a heart transplant and then actually getting to go to the OR with him for his anesthesia induction,” she said.

    “He and his family were so receptive to child life support and did such a great job asking questions and seeking to understand the process, especially since Kobe was so much older for this transplant.”

    Kobe spent months in recovery, but he made sure to work basketball into his therapy by walking and dribbling a ball down the hall as his mom held his chest tube.

    Eventually, he was released to the Ronald McDonald House, so he could have multiple follow-up appointments with his cardiologist, Dr. Robert Darragh, and Murphy, his transplant coordinator, before going home.

    He was cleared to return to school in March of his junior year, but he negotiated for more time at home so he could watch all of the NCAA tournament games on TV.

    By the time he came back for his senior year, he was in good enough shape to rejoin his school’s basketball team.

    “My goal was to come back my senior year. I was a bench rider, the player who comes in when your team is up 30 points,” he laughed, “but it was fun to practice and play with my buddies. It was awesome to get back out there.”

    Kobe went on to graduate from college and is living in Edwardsville, Illinois, while his wife finishes pharmacy school.

    He returned to Riley with his dad, Tom, two days before his wedding last week for a clinic appointment with Dr. Darragh.

    Just being back at Riley was emotional for Tom Brannan.

    “I’m going to get all teary-eyed,” he said, when asked how it felt to know his son was about to get married.

    “We spent a lot of time here, but I haven’t really thought about those days because things have been really good. When you think about it, it hits you,” he said. “These people at Riley are unbelievable. It’s crazy how good they are.”

    Those people include Dr. Darragh and Murphy, both of whom attended Kobe and Teal’s wedding over the weekend.

    “We love Dr. Darragh and nurse Debbie so much,” Kobe said. “They are so amazing, and they have done so much for me.”

    Dr. Darragh describes Kobe as a “wonderful young man who enjoys life and is a kind soul.”

    “Most of this is a testament to his parents and family, who have been a pleasure to interact with throughout Kobe’s life,” the cardiologist said.

    For his donors and their families, Kobe wants them to know how much he values their gift of life.

    “It’s a blessing, and it gives someone like me another chance at life. Getting that new heart and becoming the man I’ve become, it’s truly a blessing.”

    Learn more about organ donation at www.donatelifeindiana.org.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    Riley’s cardiology and heart surgery program is ranked fifth best in the nation by U.S. News & World Report. It is the Midwest’s top-ranked hospital for children’s heart care.

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    https://www.rileychildrens.org/connections/mom-thanks-riley-team-and-organ-donor-for-giving-our-mav-a-shot Mom thanks Riley team and organ donor “for giving our Mav a shot” 2022-05-12T10:03:00-04:00 2022-05-12T10:13:36-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Laughter spills out of the room in the pediatric intensive care unit at Riley Children’s Health.

    Maverick Stump is the main attraction, the funny 4-year-old with wildly expressive eyebrows and a tender smile.

    What he doesn’t say in words, he says with his facial expressions.

    “For as much as he doesn’t talk, he says a lot,” Amber Stump said as she watched her son engage with visitors in and out of the hospital room. “I don’t know if he’s flirting or just wanting to talk to everybody. He loves everybody here.”

    “His eyebrows are working overtime,” nurse Ellisa Rucinski said from the bedside.

    Maverick knows a lot of people at Riley, and it’s safe to say that everyone who meets him remembers him.

    The little guy has been inpatient since Dec. 3, but that’s about to change.

    This week, he and his family are moving over to the Ronald McDonald House as they begin the transition to home.

    Maverick underwent a multivisceral organ transplant Dec. 4 and has struggled to recover. Dr. Richard Mangus performed the surgery to replace the boy’s stomach, pancreas, liver, and small and large intestines.

    “OUR ONLY OPTION”

    “Transplant really was our only option,” said Amber, who lives in Mount Washington, Kentucky, with her husband, Ray, daughter Ema and Maverick. “His gut didn’t work at all. It started off with his stomach and got to where his intestines didn’t work either. He was having a lot of line infections from being on TPN at home and so we were running out of access.”

    Maverick was being treated in Louisville until it was decided that a multi-organ transplant was necessary.

    That’s when they came to Riley.

    Maverick’s transplant was a challenge to begin with because he was already “very, very ill,” IU Health’s Dr. Mangus said. “Basically, all of medicine has failed to fix the problem to the point where the only way to keep him alive is to transplant multiple organs simultaneously.”

    Diagnosed with Ehlers Danlos syndrome, which is associated with a range of digestive disorders and connective tissue problems, Maverick has relied on tube feedings for most of his life and has suffered innumerable infections.

    But transplant patients require their immune system to be suppressed to keep the body from rejecting the new organs. So, doctors spent the next several months post-transplant figuring out ways to help Maverick’s body fight infection while trying to save his organs.

    “We had to lower his immune suppressions so he could fight off the infections to stay alive,” Dr. Mangus said.

    As a result, Maverick’s weakened body continues to try to reject his transplanted organs.

    “A few of the organs are not participating as we would like them to,” Amber said. “His liver is having a hard time (evidenced by Maverick’s jaundiced appearance). His gut just seems to not want to work either.”

    GOING HOME

    “We’ve tried and maybe it’s time for a break for a little bit,” she added. “See if maybe going home helps. He’s having some really good days, and I’d like to have those days at home.”

    They are going to test the waters first at the Ronald McDonald House, where they can be close to Riley in case Maverick needs extra care. Within a few days, they’d like to be on their way back to Kentucky, in time for Ema’s kindergarten graduation.

    Amber is explaining all of this as Maverick continues to greet visitors with raised eyebrows and a grin. Her sloth-loving boy finds joy in his vast assortment of stuffed sloths, family photos on the wall, a giant stuffed sloth signed by his nurses and therapists, and nonstop showings of “The Incredibles,” “Finding Dory” and “Monsters, Inc.”

    But nothing gives him more pleasure than taking rides out on the unit in his little car, a Riley wagon or his wheelchair. While making his rounds, he gives “knucks” to everyone he sees. When the weather is nice, he and his mom go outside with his nurse to make chalk drawings and blow bubbles.

    Rucinski considers herself blessed to have been part of Maverick’s care team for many months.

    “We call him the PICU mascot. Everybody knows Mav,” she said. “He just brings a smile to everyone who gets to take care of him or even just passes by the room. He’s been through a lot, and he’s still smiling most days. I do feel lucky to be able to take care of him and be with you guys through this,” she told Amber.

    Just then, Aneesha Anand, a remote volunteer for Riley for the past two years, comes in bearing gifts. The incoming medical student and artist created a portrait of Maverick drawn from a photo and accented by a sloth.

    She presents it to Amber, who is stunned by the thoughtful gift.

    “It looks just like you, bud.”

    HARD TO SAY GOODBYE

    Maverick has celebrated most major holidays at Riley, decorating for Christmas, dressing up for New Year’s, passing out Valentine’s and searching for Easter eggs on the unit. He and his mom have grown close to the nurses and the nurse practitioners who care for him, and as much as they want to go home, they are going to miss their Riley team.

    “I love them,” Amber said. “I’m actually struggling pretty bad with having to leave. We’re ready to go of course, we’re excited to go home, but we’ve been with them for five months. They’re all just so sweet. They come in and hang out and they treat him as if he was their own. We came where we needed to be.”

    Maverick will go home on palliative care, defined as an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among patients with serious, complex illnesses.

    “We were in palliative care before the transplant, and they’re so helpful,” Amber said, “if we just need a medication or they come to check on him at home, or they swing by when we’re in the hospital to make sure we don’t need anything. They are there for support and to coordinate all the doctors involved, to try to keep things as smooth sailing as we can.”

    Because Maverick is relatively stable, it seems a good time to go home, at least for a while, she said, where he can be surrounded by his entire family – the people who love him most in the world – and still be cared for medically.

    PERSONALITY PLUS

    Despite the stresses of the past several months, Amber said she is grateful to Maverick’s donor family and to Dr. Mangus.

    “I hope every day that it all turns around. We tell Mav to love his organs and let his organs love him back. We also know that they might not, and we’ll cross that bridge when we have to,” she said.

    Dr. Mangus explained that although Maverick’s organs are functional for the time being, “they’re kind of in a chronic state of rejection,” he said.

    “Now, will they fail in a month or a year or three years? I don’t know, and that’s the thing about a child. You have to let them grow. What if that immune system decides to stop fighting these organs and to just accept them? Often, children will do that as they grow.”

    The surgeon stopped by to see Maverick earlier this week and chuckled as he recounted their interaction:

    “They had him sitting up in a chair and he had sunglasses on. At one point, I said something and he took his hand up, grabbed his glasses and lowered them just a little bit so he could look over the top to give me the eye … like, ‘I heard what you said.’ ”

    Despite him appearing almost nonresponsive much of the time – well, except for those eyebrows – he’s actually listening to everything that’s going on, Dr. Mangus said.

    “So anything that he does is actually quite funny and shows a lot of personality,” the surgeon added.

    That’s her sweet boy, and Amber continues to hope that his precious organs will start “loving him back” soon.

    “It was a big surgery – we knew that from the beginning,” she said. “We’re just very grateful, and we can’t thank Dr. Mangus and our donor enough for giving our Mav a shot.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/longtime-nicu-nurse-wins-margaret-martin-award Longtime NICU nurse wins Margaret Martin Award 2022-05-12T08:01:00-04:00 2022-05-12T08:19:11-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Lisa DeLong’s colleagues in the Riley Hospital for Children NICU pulled out all the adjectives to celebrate her this week as she was honored with one of Riley’s top nursing awards.

    In a video, team members held up signs describing the longtime Riley nurse.

    “Loyal, wonderful, passionate, compassionate, excellent, talented, strong, hard worker, impactful, patient, kind, team player, amazing, caring, dedicated” … to name just a few.

    For nearly 38 years, DeLong has worked as a nurse, taking care of fragile babies and their often equally fragile parents.

    As winner of the Margaret Martin-Roth Award, honoring a past Riley chief nursing officer who is now 102, DeLong epitomizes the IU Health values of excellence, compassion, team and purpose, her colleagues say.

    DeLong, who shies away from attention, attended Tuesday’s awards ceremony in the Riley Outpatient Center auditorium hobbled by an injury, but it hasn’t slowed her down.

    She fell off a ladder a month ago, aggravating a knee injury, but didn’t take any time off work, she said.

    “I just hobbled around with my stick and figured out how to do my job.”

    That’s the dedication she is known for throughout the unit in her current role of discharge specialist.

    “I get a lot of satisfaction knowing that kids who maybe would not have survived are able to go home to their families and I’ve been a part of that,” she said Wednesday, a day after she acknowledged feeling “shocked and honored” to receive the nursing award.

    Many of these babies go home with trachs, G-tubes, medicines and equipment, which can be intimidating to parents and other caregivers in the family, she acknowledged.

    Parents are scared, she said. Some admit it, while others might “act out,” but it’s understandable.

    “This is fear, this is not anger,” she said. “They are scared to death. We try to work them through that. You can do this, keep practicing and you’re going to be just fine.”

    DeLong started her career out of nursing school in the University Hospital special-care nursery in 1984. In 1991, she moved over to the Riley NICU. She was a staff nurse, then charge nurse for about 20 years before moving to the discharge specialist role a year and a half ago.

    “Lisa is an active teacher on our unit, she is continually investigating new, innovative ways to improve the safety of our newborns after discharge to home,” according to her nomination letter. “She frequently evaluates different ways of teaching NICU parents to give them the confidence and resources needed to take their newborn home safely.”

    DeLong said there is no way she could do her job without her Riley team’s support. It’s a collaborative process with one overarching goal.

    “My job is to give the tools to the bedside nurses and to the team so that we can best support these families going home.”

    After Tuesday’s ceremony, DeLong was met with a wonderful surprise arranged by a friend.

    A “25-weeker” she had cared for decades ago at Riley was able to reunite with her.

    “It was so great,” she said, after seeing the onetime preemie all grown up. “He just graduated from college. To be a 1-pound, 15-ounce, 25-weeker 23 years ago, that’s remarkable.”

    Megan Isley, chief nursing officer for Riley, told the nurses gathered in-person and online that they make a difference every day.

    “I hope you feel that and you feel valued,” she said. “The past two years have been a whirlwind, and we can’t predict what’s coming next. We’re learning as we go, but the one thing that has been consistent is your compassionate, exemplary care at the bedside. That is what has gotten us through, and it is what will continue to get us through as we ride out the rest of this pandemic.”

    To see photos of all the award winners from Tuesday’s program, click here.

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/love-leads-the-way-for-this-picu-nurse Love leads the way for this PICU nurse 2022-05-10T16:44:00-04:00 2022-05-10T17:13:58-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Kelsi Croy likes to say that angels walk the hallways of Riley Hospital for Children.

    What she doesn’t say is that she is one of those angels in red.

    Croy has been a nurse on the PICU at Riley since December 2015. Before that, she spent two years working with adult patients at IU Health University Hospital.

    She shies away from the spotlight, always wanting to lift up someone else instead.

    “Is it obvious I’m avoiding you,” she joked, before finally agreeing to talk about why nursing is so much more than a profession for her.

    It’s not just about what she can do for her patients, but really what they do for her.

    “I am able to help them in their journey, and they help me grow in my character,” she said, “so I can be a more giving and selfless person. That’s really important to me.”

    Jane Watson, who often works alongside Croy as charge nurse in the PICU, says her younger colleague is the one setting the example.

    “She invests in each relationship that she has. She makes each of us feel like we matter. She listens,” Watson said.

    Her approach to her work is no different.

    STRONG ADVOCATE FOR PATIENTS

    Croy grew up in Anderson and attended Ball State University, where she earned her nursing degree.

    While in college, she worked with disabled children and adults at the Hopewell Center in Anderson and found her calling helping medically complex kids.

    “I knew then that Riley was probably the place for me.”

    The pediatric intensive care unit sees some of the most critically ill kids in the hospital. It takes a special person to help support these patients and families day and night.

    “Some of these families I’ve been through really difficult times with,” Croy said. “You develop a relationship in really dark times and in light times too. We see a lot of really good things. Kids pull through in situations that you don’t always get to see with adults.”

    To be a part of that, she said, gives her purpose that she’s not sure she’d find in any other job or in any other place.

    “Being a part of the journey with these kids and families brings a lot of purpose to my life, and developing relationships with people who were once complete strangers really does make you feel like you can make a difference in the world,” she said.

    She has an amazing way of connecting with patients and caregivers from the start, Watson said, adding that Croy is a strong advocate for her patients.

    “She’s always digging a little deeper, trying to learn more about the diagnosis and brainstorming with the care team – what can we do differently, what can we do better, what is the best plan of care,” Watson said.

    For Croy, the motivation is simple.

    “The families and kiddos become a huge part of our hearts and have helped me understand ‘love your neighbor’ more and more each day.”

    ASK HER ABOUT HER DOGS

    Croy might be better known by her Riley team as Kelsi Lawless. She married Tyler Croy last summer and leans on him and their rescue dogs, Dallas and Quincy, after tough days.

    “My husband is a big support to me, and my pups are a huge stress reliever. It doesn’t matter what kind of emotion I’m having, they’re always there for me.”

    It’s fair to say dogs feed her spirit. At home and at work. She loves any excuse to get pet therapy dogs up on the PICU, believing they offer the best kind of comfort to a patient or team member who is struggling.

    She spends a good deal of her time now in a clinical advising role, guiding new nurses in a way that helps them grow while making them feel supported.

    Erin Kramer, nursing professional development practitioner for the PICU and Burn Unit, couldn’t be more proud of the young nurse whom she mentored during Croy’s early days at Riley.

    “Kelsi is the most thoughtful nurse and co-worker imaginable,” Kramer said. “She always goes above and beyond to care not only for her patients, but her fellow nurses, doctors, respiratory therapists, everyone.”

    HER HEART KEEPS GROWING

    Watson and Kramer both say Croy is the first person to plan a celebration for any team member’s milestone or to offer a shoulder to lean on in times of distress. She is often the one nominating other people for awards, wanting them to feel seen and appreciated.

    Known for her signature headbands, she often brings in colorful headbands or badge reels with flair for other team members and makes “RN” badges for longtime patients to make them feel special. She is always looking for ways to brighten a patient or parent’s day.

    “I am so proud of her and her accomplishments,” Kramer said. While it can be hard to maintain a positive attitude in such a stressful environment, “she makes it look easy.”

    And it can’t help but spill out to everyone around her.

    “Her positivity is infectious,” Kramer said.

    “She is always trying to bring joy to our stressful world,” Watson agreed.

    Croy has found her second family at Riley, relying on her co-workers just as they rely on her. Her faith also plays an important role.

    Her patients, she said, touch her soul.

    “If I didn’t believe in God, I’m pretty certain I couldn’t do this job. These kids help us develop into more kind-hearted, understanding and selfless people,” she said. “The world can be such a scary place at times, and as a team, I truly believe we strive to bring light into a dark space for our patients.

    “And when we can’t be that light,” she added, “one of our teammates steps in and picks up our defeated souls.”

    For Watson, nothing sums up her “work sister” better than Maya Angelou’s inspirational words: “People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

    “That is Kelsi 110 percent,” Watson said. “That is just Kelsi.”

    Photos submitted and by Mike Dickbernd, IU Health visual consultant, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/from-toddler-to-teen-in-a-heartbeat From toddler to teen in a heartbeat 2022-05-10T08:56:00-04:00 2022-05-10T09:08:43-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    When Tami Anderson’s little girl was first diagnosed with cancer, the Bloomington mother and nurse wasn’t thinking about her daughter’s high school prom.

    After all, Ava Anderson was just 3 years old in 2010 when doctors diagnosed a mass in her kidney as Wilms tumor. But fast-forward 12 years, and prom was top of mind for mother and daughter.

    Ava, a freshman at Bloomington North High School, went to prom two weeks ago with a junior at her school. She looked beautiful in her elegant, off-the-shoulder dress, and her mom couldn’t help but flash back to 3-year-old Ava.

    That’s because the Riley Children’s Health surgeon who placed her port for chemo – Dr. Karen West – positioned it a smidge below where it typically goes in the upper chest.

    “She told us she did that because one day Ava is going to go to prom and she’s going to want to wear a strapless dress and we don’t want that scar to show,” Tami recalled.

    At the time, it seemed like a sweet gesture because prom was a long way off, but it told Tami something else.

    “We were going through all the emotions,” she said about the diagnosis. “Even though it was such a high rate of cure, you think of cancer and your mind automatically goes to a dark side. But Dr. West was telling us there was a future for her. It meant a lot.”

    Even though Ava didn’t end up wearing a strapless dress to prom, the point is, she could have, her mom said.

    “It was such a monumental moment. My heart and my mind went back to that day (at Riley).”

    Ava, now 15 and cancer-free, had no symptoms before her mom noticed a mass on the left side of her abdomen when she picked her toddler up one day. When it was still there the next morning, the nurse in her told her something wasn’t right, and she took her daughter to her pediatrician. The initial suspicion was a simple case of constipation.

    Jami, who works for IU Health Southern Indiana Physicians, advocated for further testing, and when the doctor learned the results, he sent Ava and her parents straight to Riley in Indianapolis. There, they found Dr. West and oncologist Dr. Jodi Skiles waiting for them.

    “We had the best team I could ever ask for,” Jami said. “Everything fell into place like it was supposed to.”

    In fact, she said they built such a connection with Dr. Skiles that little Ava was a flower girl in the physician’s wedding not long after she finished her treatment.

    Today, Ava is a varsity cheerleader at her high school and is on a competitive cheer team in Bloomington that recently won a national title. She is also involved with Hoosiers Outrun Cancer and the Riley Dance Marathon at Bloomington North.

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    https://www.rileychildrens.org/connections/podcast-maternity-matters-patient-shares-postpartum-anxiety-struggles-and-how-she-found-help PODCAST: Maternity Matters - Patient shares postpartum anxiety struggles and how she found help 2022-05-09T08:23:00-04:00 2022-05-10T11:39:46-04:00

    Listen to more Maternity Matters episodes.

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    https://www.rileychildrens.org/connections/its-a-bonus-mothers-day-for-this-new-mom It’s a bonus Mother’s Day for this new mom 2022-05-08T12:59:00-04:00 2022-07-29T10:07:11-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Lindsay Staup was not supposed to be celebrating Mother’s Day quite yet, but her baby girl decided to make an early appearance, so she’s counting it as a bonus holiday.

    Everly Staup, originally due June 7, arrived March 21 via emergency C-section after Lindsay went into early labor and Everly was in the breech position.

    The Maternal Fetal Medicine Team at Riley Children’s Health had been following Lindsay for several weeks after tests showed Everly might have a heart defect, as well as duodenal atresia, a condition in which the small bowel has not developed properly. Her kidneys also were enlarged because Lindsay had a buildup of fluid.

    Lindsay recalled that on Friday, March 18, she sensed that she was not going to be able to carry her baby much longer. Three days later, her water broke and she and husband Tyler rushed to Riley, where the medical team tried to stop the labor, but Everly wasn’t waiting.

    “Two hours later, she was here,” Lindsay said. “We didn’t have time to hold her or even see her because they rushed her off for resuscitation and assessments.”

    FOCUSED ON BLESSINGS

    Those were hard days, as Lindsay recovered in the Maternity Tower and Tyler divided his time between his wife and his daughter in the Riley NICU.

    But as she snuggles her daughter in her arms weeks later with Tyler by her side, Lindsay is focused only on her blessings.

    “Emotionally, it was really hard, but we have a lot of support around us, and the doctors and nurses were so comforting.”

    One of those nurses is Kendall Tankersley, who has cared for Everly since her second day of life. She describes the preemie as a “fighter and a feisty little lady.”

    “She’s had a lot going on in her short little life, and every day she’s just conquering something new; I’m just so proud of her,” Tankersley said, adding, “Lindsey and Tyler are amazing with her. They’re such good parents. I felt an instant connection with them.”

    The young parents felt that same connection.

    “She takes such good care of Everly. It’s very comforting,” Lindsay said.

    FIRST TIME IN HER ARMS

    Lindsay got to peek at her 3-pound “little miracle” while in recovery, but she didn’t get to hold her until after Everly had surgery on her intestines, performed by Dr. Matt Landman.

    She had to be content with stroking her daughter’s tiny fingers through the holes in the isolette in the NICU.

    “That was keeping me going.”

    On Day 16, she got to hold her little girl for the first time.

    “I was so happy. Getting that bonding time with her has been so great, and she has been a little rock star,” the new mom said.

    Both Lindsay and Tyler, who actually met when they were in kindergarten, are teachers in Brownsburg Schools, and they said their students, staff and families at the schools have been a great support.

    “So many people have been encouraging us through this. It’s a journey we did not expect, but we’ve learned a lot about ourselves,” Lindsay said.

    “We have learned to just be still and trust God,” Tyler added.

    He and his wife have been inspired by the cards and notes they have received from their students. They keep them in a box at home to share with Everly someday.

    POWER OF PRAYER

    The fundraisers, meal train, gas cards and other offers of help have humbled them, he said.

    “We’re not normally people who ask for help, but we’ve learned to accept it, and that’s been a good lesson.”

    Lindsay, a first-grade teacher, said Everly has reminded them of the power of prayer.

    “I don’t think we could have gotten through this without our faith. She is our miracle. There’s just so much love around us, and she’s taught us how to be strong when we didn’t feel like we could be strong.”

    As of last week, Everly had joined the 5-pound club, her mom said, but she continues to require respiratory support.

    “She’s the lady boss and she is definitely in charge. We come in every day not knowing what to expect, but she seems to be on the uppity up.”

    And while it’s hard to leave every night to go home, she and Tyler know that taking time for themselves is important so they can give their best to their daughter.

    “The first time we left her we were a mess. We got to the car and just started crying. We have a baby, but we’re not taking our baby home. It’s such a weird feeling.”

    But they have complete trust in the staff at Riley, knowing they are taking great care of their little miracle.

    “We love all the staff here. Even on the days when we don’t hear the best news, everyone is so comforting,” Lindsay said. “There’s so much peace. We are two very anxious people, but throughout this we’ve learned to let go and trust in this process and in these people.”

    GIFT FOR NEW MOMS

    Now, Lindsay’s first Mother’s Day is being spent at Riley, where a member of the NICU Nest family support team has already delivered a care basket with gifts for the new mom. She has no doubt that Tyler will spoil her too.

    But the best gift is the little bundle in her arms.

    “She is supposed to still be in my belly, but it is cool that she is here and I get to hold her and spend time with her on Mother’s Day.”

    Despite the hard days and nights, the couple believes that this is the journey they are meant to be on.

    “I wouldn’t change it, to be honest,” Lindsay said, noting how much she and Tyler have learned and grown. “She’s worth everything we went through.”

    They plan to use their experience to help other parents going through similar challenges.

    “We hope that when this is over, we’ll have the knowledge and ability to help others like we were helped,” Tyler said.

    “I don’t want to just leave the NICU behind,” Lindsay added. “I want to help other people, whatever that support looks like because that’s what has helped us get through.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/cystic-fibrosis-wont-keep-this-riley-teen-from-graduation-day Cystic fibrosis won’t keep this Riley teen from graduation day 2022-05-04T09:07:00-04:00 2022-05-04T09:25:38-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    When Kami Knight crosses the stage at West Vigo High School in Terre Haute next month, she will be stepping out of her comfort zone but moving toward a future that might have seemed impossible years ago.

    Kami, a patient at Riley Children’s Health since she was just a few weeks old, is graduating from high school and plans to study to become a radiology technician. Her mom, Heather Knight, says Kami is on the shy side, but she encouraged her to mark the milestone in a public way.

    Diagnosed with cystic fibrosis when she was 6 weeks old, Kami has been treated at Riley ever since, sometimes spending weeks at a time on the pulmonary unit. CF is a genetic disorder that impairs lung function. Dr. Michelle Howenstine is Kami’s pulmonologist.

    The pulmonology floor is where Kami met Riley educational liaison Heather Homan, who has worked with her to keep up her schoolwork since Kami was in middle school, though Kami’s time with the school program goes back to first grade.

    And now she’s graduating, earning a Core 40 diploma and the designation of 21St Century Scholar. It makes Homan, a mother herself, proud as punch.

    “Kami has persevered through so much – many hospitalizations, Covid, being a virtual student and doing homebound school,” Homan said. “I have been able to participate in case conference meetings with her family and have assessed her outpatient school needs in our Cystic Fibrosis clinic. I have thoroughly enjoyed seeing her progress academically. She has grown into an amazing young lady.”

    During Teacher Appreciation Week, we wanted to highlight one of Riley’s teachers and share the impact they have on Riley patients. The Riley School Program has been part of the hospital since its opening in 1924.

    Educators not only work with patients to make sure they are doing their homework, they also collaborate with the child’s home school to ensure that their educational needs are being met.

    Homan, who has been a Riley educator for nearly 14 years, has covered plenty of service lines in that time and says she has loved every area in different ways.

    Seeing Kami decked out in her cap and gown, accented by sneakers, fills Homan with pride.

    “It gives me goosebumps. She is 110 percent deserving of all of this, and I know she is going to be successful in college and in life.”

    Cheering for Kami on graduation day (June 5) will be her mom and her dad, Charlie, her sister and grandparents. But others, like Homan, are just as proud.

    And it’s about more than learning English, history and math. By building relationships and understanding how to use their voices to advocate for themselves, students like Kami learn many lessons from their time at Riley.

    “Heather never gave up on her,” Knight said. “She was a very good advocate and helped her tremendously.”

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    https://www.rileychildrens.org/connections/letting-in-the-sunshine Letting in the sunshine 2022-05-03T12:12:00-04:00 2022-05-03T12:41:47-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Meg Sanders is running late. She’s been running all morning, so it’s appropriate that she is wearing sneakers as she races into the Child Life Zone at Riley Hospital for Children.

    “I’ve been booked back-to-back-to-back today,” she said as she caught her breath. “But it’s OK, it’s all good stuff.”

    Sanders stepped into the role of special events supervisor at Riley in January and has management responsibilities for a portion of the Child Life Specialist team. She replaced Melissa Sexton, who accepted a new job with Riley Children’s Foundation after more than 20 years at Riley Hospital.

    The two have known each other for years. Sexton actually introduced Sanders to the field of Child Life at Riley back when Sanders was a high school sophomore in Zionsville.

    “I was invited here to Riley and met with Mel in the playroom of our old hem-onc stem cell unit, which is now the Maternity Tower,” Sanders recalled. “It was a beautiful spot to learn what Child Life was. Mel directed me to great schools that offered internships, and I committed to it.”

    JOINED RILEY 6 YEARS AGO

    Lucky for Riley, she returned here to begin her career. After college, she was hired by Sara Barnett, Riley’s manager of child life services, and started as a child life specialist six years ago this month. In the beginning, she floated to different units, namely 9 East and the urology clinic, but for the past three years, she worked in interventional radiology on the second floor, preparing kids for procedures.

    “I am passionate about helping kids feel safe in a situation where so many things are out of their control,” she said. “On the second floor of our hospital, kids go back across the red line and separate from their parents, their support, their caregivers, and they come to the people with the blue pajamas, as I like to call them. I take great pride in the work that child life specialists do on the second floor and have loved being part of that team for three years.”

    While she’s not new to the hospital, she acknowledges that she has plenty of room to grow.

    “I couldn’t possibly attempt to fill Mel’s shoes. I wear different shoes,” she said. “I’m Meg Sanders, and I wear sneakers.”

    SUPERHERO GUESTS

    She needed those sneakers last week to keep up with the superhero team that swooped in to visit Riley patients. Professional window washers dressed as Spiderman, Thor, Iron Man and the Incredible Hulk rappelled down the walls of Riley, hanging outside the windows as kids and adults cheered.

    It was the first big event she orchestrated in her new role, and it was a huge crowd-pleaser.

    After two years of virtual events, the superhero appearance marked the beginning of a new chapter, hopefully post-pandemic, Sanders said. In time, the Child Life Zone will reopen, and in-person parties will resume, but this is also a chance to reassess how to best care for all kids, particularly those whose health prevents them from joining others in activities.

    “It’s time to start building again. The pandemic has taught us to be creative with technology and virtual options for just about anything, and I intend to carry that through,” she said.

    The daughter of a librarian, Sanders understands how participating in group activities, even if they are virtual, fosters a sense of togetherness and connection.

    “It’s part of our one-team approach at Riley,” she said. “We are one hospital, and each of our patients should have the opportunity to participate in a party even if they cannot be there in person. We have a lot of assets here – we need to look at things in a different way.”

    While she appreciates the precautions Riley has taken in limiting visitors and in-person events, she will be ready to kick off the party in the Zone when the time arrives.

    “I hope to see the Zone come alive again. I can’t wait for that,” she said. “But what we learned through Covid is to celebrate every small victory. I don’t know that working in healthcare will ever be the same, but we’re defining what that will look like and how we can be grateful when we’re on the other side.”

    LEADING WITH “ENTHUSIASM AND EXCELLENCE”

    Sanders, who planned special events in college and started Ohio University’s first dance marathon, has just as much passion for her work as a child life specialist. That’s why she worked with Barnett to carve out time for continued support in that area on the second floor.

    Sanders now supervises the second-floor perioperative child life team, as well as overseeing special events, the Zone, community partnerships, the Riley studio and CCTV programming.

    “It was important to me to add a clinical aspect to this role where I could jump in and help support the team,” she said. My passion point is still the second floor, and I’m fortunate to have a leader who listens to what I’m passionate about to keep me invigorated and excited about coming to work.”

    Barnett believes Sanders is a perfect fit for her new role, saying she “leads with enthusiasm and excellence” every day.

    Not only does she bring joy and comfort to patients and families, she is adept at building relationships and engaging community partners, Barnett said, which is key in her role as special events supervisor.

    “Meg quickly mastered this skill through her authentic leadership. I receive positive comments about her leadership every day from team members and community groups alike. Riley is fortunate to have Meg leading the way with special everts for our patients.”

    Sanders, who lives in Broad Ripple with her husband, Erik, and their rescue pup, Baker, loves to indulge her creative side in her spare time. That might include DIY projects in the couple’s 100-year-old bungalow, working in their large garden and traveling.

    “I like to live life somewhat spontaneously, taking opportunities as they come.”

    GUIDED BY COMPASSION

    The opportunity to take a leadership role at Riley came at a good time, and she felt called to explore it, she said, especially as she watched how her fellow team members gave their all during the pandemic.

    “We were the only multidisciplinary team to remain in the hospital during the entire pandemic. I’m so proud of the work we were able to do in that time,” she said.

    But just like many other people at Riley, her team is tired and has struggled, she acknowledged, blinking away tears and recalling how team members would find respite in the Zone during the shutdown and learned to lean on one another.

    During her interview process, Sanders was asked which of IU Health’s four core values she identified most with, and she responded “compassion.”

    “We are human beings who come in to do this work, and we need to be cared for too in order to give the best of ourselves to our patients and families,” she said.

    “I hope this team sees that our leadership team truly does care about every single one of them. I know how special they are and am so proud of the work they do every day. I don’t want them to feel like that’s ever lost. I’m learning as a leader there are a lot of things outside my control … but ultimately, we just want to do the best for our Riley kids and families, and that’s a culture that transcends Child Life to the Riley way.”

    Now that she hopes the worst of the darkness of Covid has passed, she looks forward to seeing how the team can continue to grow.

    “We want to let more sunshine in to help lift some of the weariness everyone is feeling. And we must acknowledge how we’re feeling – that’s how we conduct our sessions with children. Why wouldn’t we do the same with each other.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/superheroes-fight-the-good-fight-at-riley Superheroes fight the good fight at Riley 2022-04-28T15:51:00-04:00 2022-04-28T16:49:38-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Superheroes saved the day at Riley Hospital for Children in Downtown Indianapolis today, bringing smiles and squeals of delight from kids and adults alike.

    Spiderman, Thor, Incredible Hulk and Iron Man rappelled down the walls of Riley, stopping at each floor to wave and give high fives to patients gathered in unit playrooms.

    Hanging hundreds of feet in the air isn’t for everyone, but these guys are superheroes so they have to be brave, one parent explained to her child, who was watching in wonder.

    Then again, the guys hanging outside the window point to the kids and caregivers inside as the real superheroes.

    Underneath the capes and masks are everyday heroes Ed Sunday (Spiderman), Ryan Green (Iron Man), Clarence Walker (Incredible Hulk) and Aaron Myers (Thor), all professional window washers with American National Skyline Inc.

    “We do it for the kids,” said Sunday. “Everybody pretty much knows someone who’s been at Riley. I have a 31-year-old son who wouldn’t be here if it wasn’t for Riley.”

    “I like helping the kids out and seeing their smiling faces,” agreed Walker.

    There was no shortage of smiling faces today, as kids crowded around the windows to give fist bumps through the glass to the costumed crusaders, sending the superheroes bouncing off the walls.

    John King, 10, was waiting patiently for Spiderman to appear. When he did, John went over and gave him a high five. Other kids screamed when they saw their favorite character.

    Even big kids like nurse Haley Miller got in on the action.

    “Nobody told me this was happening,” Miller squealed, as she posed for a photo with the masked men. “How cool is this!”

    Later, after she had returned to Earth, she said, “I think it’s awesome that we have these options for the kids to make their stay better and to make them happy.”

    Dr. Laurie Ackerman, pediatric neurosurgeon, poked her head in the door on 9 West when she saw the crowd gathered.

    “This is the best thing I have seen in a long time,” she said as she took a photo. When a volunteer offered to take her picture with the superheroes, she politely declined, saying, “There are much more important short people in the room.”

    Meg Sanders, special events supervisor, spent weeks coordinating today’s special appearance.

    “This is our chance to bring some Disney magic to our Riley kids in Indiana,” she said.

    After going more than two years without special guests and visitors, today’s event was a treat for everyone. And the timing couldn’t have been better. Today is National Superhero Day, celebrating the real and fictional superheroes in our lives.

    See the full photo gallery here.

    Photos and video by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/music-therapy-student-holds-ukraine-in-her-heart Music therapy student holds Ukraine in her heart 2022-04-27T18:03:00-04:00 2022-04-27T18:17:26-04:00

    By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    When she sits at the piano to play, Chloe Crockett is transported to another world. A world where war hasn’t devastated a country she adores or people she loves.

    The haunting melody she plays in the lobby of Simon Family Tower at Riley Hospital for Children is called “Ukrainian Soul.” It’s a composition she and another musician – a friend in Ukraine – began to write earlier this year, before war arrived at the Eastern European nation’s doorstep.

    Crockett is in her final semester at the University of Indianapolis, where she is studying to be a music therapist. For the past several months, she has been coming to Riley one afternoon a week to work with patients under the supervision of Riley music therapist Kalin Hagedorn.

    The experience has reaffirmed her desire to work with children in a hospital setting, where she believes the power of music promotes healing.

    “It’s been amazing,” the 21-year-old musician said. “The opportunity to come here and be able to practice my skills and grow as a student music therapist has been amazing. Kalin has been so supportive and encouraging and structured in what I’m required to do and what the expectations are.”

    Crockett sees two to three patients during the block of time she is at Riley, primarily in the neonatal intensive care unit. She has also spent time on the PICU and in hematology-oncology.

    “I’ve learned so much just about what it’s like to work with patients in really vulnerable situations,” she said.

    FIRST TRIP TO UKRAINE WAS IN 2019

    She has been playing piano since she was 3 and says it is her instrument of choice, but she also loves to sing and play guitar. The latter two skills are key to her work within Riley because music therapists travel from room to room seeing patients.

    Crockett, who grew up in Whiteland and was home-schooled, traveled to Ukraine for the first time in 2019. She was there with members of her church to do a service project and was struck by the beauty of the country and its people.

    She returned in 2021 and helped put on a camp for children, and that’s when she met Olena Diukova, who wrote a song for the camp and helped teach it to the kids. The two became fast friends.

    When Crockett returned to the States, she began thinking about composing a song to honor Ukraine for her senior recital. She asked Diukova if she would collaborate with her, and the UIndy student returned to Ukraine in January of this year, just weeks before Russian forces invaded the country.

    While she hoped to see her friend in person during that trip, it did not work out, but the two connected online afterward to write the first two pages of “Ukrainian Soul.”

    Crockett said she did not sense any increased tension on the streets of Kiev, the nation’s capital, in January, but everything changed when the first missiles struck.

    FINDING MEANING IN MUSIC

    “The country is such a special place to me. I’ve fallen in love with the people there – so gracious and kind and loving. It breaks my heart that for now I won’t be able to return … but to find a way to encourage them and use my skills as a musician is special to me.”

    When war broke out, Crockett assumed the project would be put on hold. She contacted Diukova immediately to see if she was OK, and her friend said she planned to remain in Kiev.

    As things deteriorated, Diukova fled to another part of the country, then eventually resettled in Belgium.

    “What I’ve learned about the war is that things change by the hour,” Crockett said.

    Still, Diukova wanted to continue the composition project.

    “We each wrote half of the theme, and we are writing individual variations,” said Crockett, who will perform the song at her senior recital at UIndy on Saturday night, April 30.

    While the original goal was to blend the sounds of Ukrainian and American music and bridge the gap between the two cultures, Crockett said war brings even more meaning to the piece.

    “The war is so sad and devastating and so unjust,” she said, but the song allows the two women to “commemorate the beauty of Ukraine, yet also the sorrow.”

    UNIVERSAL LANGUAGE

    Crockett, who plans to return to Europe in June to help Ukrainian refugees, said her experience at Riley has crystallized her vision of the power of music.

    “Just like music is helping patients here in this amazing facility with these amazing nurses and amazing staff and music therapists, so the power of music can speak to people all across the world. It truly is a universal language,” she said.

    Hagedorn is just a few years older than Crockett, but she is proud of the music therapy student’s heart, her work ethic and her desire to connect with people through music.

    “Chloe is hardworking and curious, and she asks great questions about the why behind what we’re doing here at Riley,” Hagedorn said. “It’s great to see the growth in her.”

    As a music therapy student, Crockett, who is engaged to be married in August, has learned a lot about the psychological and emotional effects of music on the body.

    “That is something I see within this population (at Riley) – the effects of music on our emotions and how we’re able to express ourselves.”

    Once she attains her music therapy credentials, she would love to take music therapy to other countries like Ukraine, she said, where she can use some of the therapeutic and clinical skills she learned here.

    “There is nothing more expressive that everyone can understand than music. It touches the lives of everybody in such a special way.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/i-had-to-change-everything-i-thought-i-knew-about-parenting-about-autism. “I had to change everything I thought I knew about parenting, about autism.” 2022-04-27T07:55:00-04:00 2022-04-27T08:25:24-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Kairo Buford is a 3-year-old force of nature. He is busy and boisterous, but also sensitive and introspective.

    Diagnosed with autism a year ago, his progress since being connected with resources through Riley Children’s Health has been nothing short of remarkable, says his mom, Autumn Grimes.

    “We limit them with our own ignorance,” Grimes said as she watched her youngest child engage in therapeutic play with Riley occupational therapist Mary Hart MacLeod.

    “I have four other children, but I’m a first-time parent with him. I’m learning step by step with him,” Grimes said.

    When she first heard the diagnosis, she cried. She wondered if her son would ever talk or read or do things for himself.

    At first, she babied him, she said, but she soon realized that she needed to change her approach. Kairo was going to surprise her.

    “I had to change everything I thought I knew about parenting, about autism.”

    MacLeod, who has been seeing Kairo since September, is working with him on what she calls “executive functioning skills” to support his daily routines – dressing, mealtime, bath time, etc.

    “He is now a pro at routines,” she said. “He keeps his other family members in line.”

    He knows when he comes into therapy, for example, that he must take off his shoes and line them up on the wall before he enters the playroom. The adults follow suit.

    When he leaves to enter another area, he must stop to put his shoes back on. The act of taking off and putting on his shoes helps mark time and prepares him for a transition, MacLeod said.

    Occupational therapy, she explained, is very broad. While therapists work with patients on fine motor skills, gross motor skills and visual motor skills, there’s much more to it.

    “We look at daily activities and all the different areas of the human experience that can affect your daily living skills,” she said. “Especially with our autistic clients, a lot of it is finding accommodations and adaptations in their environment and in their world that work for them, while helping family members get on the same page to make sure they feel successful during their day.”

    In Kairo’s case, he has a large, supportive family, MacLeod said, and they enjoy having family gatherings.

    “We are working to find ways that he feels most comfortable engaging in those activities and also helping mom and grandma recognize what signals he gives when he is ready to go and how to make it a successful experience for everybody,” she said.

    Mom and grandma (Patricia Hansford) accompany Kairo to his weekly therapy sessions at the Riley clinic on the Far Eastside. Their participation in his therapy is vital to his continued development, MacLeod said.

    “Mom and grandma have been phenomenal advocates for him. They are very involved in our sessions and have done a lot of legwork on their own to learn about how Kairo’s brain works so we can help him instead of trying of trying to change his brain into what ours looks like.”

    The old way of thinking when it came to autism was that early intervention could help change the way children’s brains work, thereby making them “less autistic,” she explained.

    “We’re really moving away from that now. We’re not trying to change their brains, but we want to help them be more successful. I look at early intervention as a way we can work with parents and caregivers to better understand their child and set them up for success.”

    In addition to working on routines and learning sequences, Kairo is moving into classroom-based preparation – doing things like cutting with scissors and following directions. He will start preschool in the fall at a school for children with special needs, where he will continue to receive occupational and speech therapy.

    Kairo’s speech has come a long way since last summer, his mom said. He was nonverbal, but now he says several words, sometimes stringing two or three into a sentence.

    As if on cue, MacLeod is telling Kairo while working with him on a puzzle: “Remember if something is hard or you need help, you can touch me or say help please.”

    He considers that for a moment, then says, “Help me,” which delights his therapist, his mom and grandma.

    “We went from no communication to this,” Grimes said, adding that her son has a tablet to help with language, and the family uses a lot of visual clues/pictures around the home and some sign language to help.

    But Kairo has plenty to say during his hourlong session as he sorts plastic animals, tosses stuffed frogs into a basket, swings on a large tire (his moment of Zen) and practices his cutting skills.

    MacLeod is adept at keeping him on task in a way that doesn’t lead to frustration, but she knows that anxiety and frustration are often just beneath the surface.

    That’s why she suggests that Grimes work on putting together a picture book for Kairo to prepare him for the first day of school – including photos of the school, the bus he will ride, his teacher, etc., and going over the routine he can expect on school days.

    Grimes and Hansford suspect that Kairo, who will be 4 in June, already recognizes some words in print, so reading isn’t far off. In fact, MacLeod said, kids with autism may even read a little earlier than other kids. As she says this, Kairo giggles as only a child can.

    The sound of laughter fills the room. His mom smiles.

    “Are there days when Kairo frustrates me and I want to shave my head bald? Of course, but it’s not his fault,” Grimes said. “There are times he’s just angry and I’m like, ‘What happened?’ Well, nothing happened in my eyes, but something did in his world. Now, he tells me in his own way.”

    She only has to listen.

    “We hinder our children from the progress they can make sometimes.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/one-familys-loss-brings-life-to-a-baby-girl One family’s loss brings life to a baby girl 2022-04-26T09:19:00-04:00 2022-04-26T09:41:01-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Addison Rauch is poised to take her first steps. Always an exciting time for any family, but even more so for her parents, Nathan and Olivia, because their little girl might not have made it to her first birthday without the generous gift of another family.

    The Fort Wayne couple found out Addison likely would need a liver transplant last spring when she was just 2 months old. Diagnosed with biliary atresia (bile is blocked from flowing into the intestine so it builds up and damages the liver), she became jaundiced and bloated.

    She was rushed to Riley Hospital for Children, where her diagnosis was confirmed, and she underwent the Kasai procedure, during which doctors attach a loop of the small intestine to the liver to establish bile flow.

    When it works, which is about half the time, the operation provides a path that allows bile to drain from the liver. Unfortunately, in Addison’s case, the procedure didn’t work, so when she was about 6 months old, doctors began the process of getting her name added to the transplant registry.

    Riley pediatric gastroenterologist Dr. Jean Molleston has been with the family since Addison first was diagnosed with biliary atresia after she became jaundiced.

    “It was apparent that Addison was going to have more and more problems,” Dr. Molleston said. “Fortunately, she got an organ in time.”

    In October of last year, Addison was officially listed for transplant, and the family got the lifechanging call two days before Thanksgiving.

    Talk about giving thanks.

    The couple and their then-10-month-old daughter spent Thanksgiving at Riley. Dr. Richard Mangus performed the surgery.

    While the Rauches were grateful for the lifesaving gift, they couldn’t help but think about the giver’s family.

    “It’s hard to think about – that her liver came from another child,” Nathan said. “Especially going into the holiday season, it was a lot to try to wrap our heads around. It still is. We can never repay them or thank them enough.”

    To look at their child today, the difference from pre- to post-transplant is “night and day,” Nathan said.

    “Before transplant, she was agitated and fussy, never able to get comfortable. Now, she is happy and curious.”

    The process has not been easy, but Addison’s care team, including Dr. Molleston, has helped make the difference, he said.

    “She’s been with us since day one. She’s done an awesome job.”

    Specifically, he said, the physician has been realistic with them from the beginning, answering all of their questions without sugarcoating anything.

    “The biggest thing was just honesty. I appreciated that very much because being a first-time parent it’s all brand new and then you throw something like this into the mix. We didn’t know what was going on, we’d never heard of biliary atresia before, so just having her there to walk us through it, giving us realistic expectations and goals, was awesome.”

    For her part, Dr. Molleston said the Rauches have been excellent partners in Addison’s care.

    “You can really collaborate with them and discuss pros and cons. They’ve been a delight.”

    She also gives credit to the extended Riley team, including transplant coordinator Angi Dickens.

    “She does all the real work – makes the phone calls, arranges the labs, ultrasounds, IV infusions,” the doctor said. “She is their go-to person. She’s just great and very dedicated.”

    In the end, Addison did great with her liver transplant, Dr. Molleston said. “And now she’s just a fat and sassy, gorgeous baby.”

    Her prognosis is good, she added, because transplanted livers tend to last a long time.

    Addison, who is immunocompromised because of the medications she must take to keep her body from rejecting the liver, has a tight circle of people who care for her, including Nathan’s mom, a nurse.

    But she won’t be a “bubble baby,” Dr. Molleston said, even though she’ll be watched closely for fevers and infections.

    “There is every reason to expect a good life. She’ll go to school, she’ll do normal stuff, go to college, have kids. These kids do great. If you saw her, you’d never know.”

    Addison celebrated her first birthday in February and continues to do well today, Nathan said.

    “I had always heard that Riley was this top-notch children’s hospital, but you don’t really know how great it is until you have to experience it for yourself. I couldn’t be happier with the level of treatment and care she got down there.”

    Find out how you can become an organ donor here.

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    https://www.rileychildrens.org/connections/podcast-maternity-matters-how-friends-and-family-can-support-nicu-families PODCAST: Maternity Matters - How friends and family can support NICU families 2022-04-25T09:40:00-04:00 2022-04-25T09:43:05-04:00

    Listen to more Maternity Matters episodes.

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    https://www.rileychildrens.org/connections/working-on-the-burn-unit-helps-her-honor-a-lost-friend Working on the burn unit helps her honor a lost friend 2022-04-21T13:29:00-04:00 2022-09-02T09:44:03-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    The accident still brings tears to Caitlin Dougherty’s eyes.

    She is recalling a fiery crash in 2004 that robbed her of one of her best friends, but years later, the impact would reveal her own path forward in life.

    Dougherty was just a teenager when her friend and fellow high school swimmer Megan Sahlhoff suffered devastating burns in a car crash. Megan was hospitalized but did not survive her injuries.

    Dougherty, who thought she wanted to be a marine biologist, changed course to focus her studies on children – specifically pediatric burn patients.

    Today, the married mother of two is a decade into her career as a certified child life specialist on the burn unit at Riley Hospital for Children at IU Health.

    She wouldn’t want to be anywhere else.

    “I knew coming into the field of Child Life that I wanted to work with patients who had burn injuries, and I’ve been here ever since. I love the work that I do, and I think it’s a way to honor Megan,” said Dougherty, who remains in touch with her friend’s family 18 years after the accident in northern Indiana.

    “TEARS ARE OK”

    She brushes away her tears during an interview and apologizes. But she knows that those tears are part of continued healing. It’s a message she relates to her patients every day as they deal with fear, anxiety and pain on the burn unit.

    “Tears are OK,” she tells her kids – both at work and at home.

    “My job as a child life specialist isn’t to help you not cry at all during a procedure. It’s to help you find ways to cope positively through it, and crying is a coping skill,” she said. “I think in general people might see crying as a weakness, but it’s a normal emotion, so just embrace it.”

    Easier said than done when you’re an adult, she acknowledges. But no less important.

    Burn injuries are some of the worst a person can experience, so it takes a special human to work with these patients, especially when they are kids.

    For Dougherty, the challenges are also the rewards.

    “I love being able to empower and support children through something that is probably the most difficult part of their stay here on the burn unit,” she said. “It’s painful, and it’s hard emotionally both for families and children.”

    But that’s part of why she loves what she does.

    “The resiliency I get to see with the kids, how they come out on the other side and they’re stronger because of it … getting to be a part of that process keeps me going.”

    HELPING THE HEALING

    Children are like little sponges who soak up information and skills that she hopes will carry them through the rest of their life, she said. Skills like proper breathing help calm the body, and “alternate focus options,” including stress balls and toys, help distract.

    “It really is an individualized approach,” she said. “I like figuring out what is going to work for each child. Sometimes that’s just holding their hand and talking to them during a procedure.”

    As the lone child life specialist on the burn unit, Dougherty is often pulled in different directions, but she does her best to see as many kids as she can on a given day. She has many tools in her toolbox to help refocus patients’ attention from their injury, especially during bandage changes and debridements.

    Those procedures involve the removal of dead, damaged or infected tissue to promote the healing of remaining tissue.

    Whether it’s watching a show together on her iPad, playing a game or just holding a child’s hand and talking, Dougherty has a gift for connecting with kids, according to one parent whose daughter spent two weeks on Riley’s burn unit.

    “Caitlin is the best,” said Christine Buehler. “The experience we had was so much more improved just by her participation in Sara’s healing.”

    Sara, now 13, was injured last June when boiling water splashed on her stomach and back as she was cooking macaroni and cheese at her family’s home in Bloomington.

    The hospital stay and the treatments took a toll on her mom and dad, but Sara kept her cool.

    “I think we were maybe more overwhelmed than Sara was,” Christine said.

    It helped that the eighth-grader connected so easily with Dougherty, whom she described as “nice, kind and funny.”

    “She made me feel comfortable during the debridements when I was feeling very strange and uncomfortable,” Sara told her mom.

    ONE TEAM

    The Buehlers were present during their daughter’s debridements and recall how Dougherty brought a “calm and reassuring presence” to each situation.

    “She was almost like a friend to Sara. She was very real and genuine in how she talked to her.”

    In the end, she said, “We feel that Caitlin was instrumental in our daughter’s healing and her well-being. She allowed the medical providers to do their jobs more effectively because Sara was occupied,” Buehler said. “They worked so well as a team.”

    That’s what Dougherty loves about her unit. She might not be treating a patient’s physical injuries, but she is a valuable member of the team.

    “The burn unit is smaller, and we are really close,” she said. “People are great at understanding how everyone’s role is important to the child. They call me appropriately to help with procedural support, but also emotional support.”

    Occasionally, Dougherty cares for kids who are hospitalized for reasons other than burns, including one young man named Leo Torres. The bright and polite 10-year-old, who was recovering from an emergency surgery, was delighted when Dougherty surprised him with collectible Fortnite figures donated to the Riley Cheer Guild.

    He talked about how she helped him prepare for surgery.

    “She showed me a video about what I would see in surgery, and she let me decorate my mask. When I told her I was bored, she told me there was an Xbox. We watched movies, and today she found these Fortnite action figures,” Leo said, before turning to Dougherty to say, “I really want to thank you for helping me.”

    “HOW DID I MAKE A DIFFERENCE?”

    Patients like Leo melt Dougherty’s heart and make her think of her own kids at home.

    She carries them with her to work every day in the form of a tattoo on her right arm. The images of a fox (her son’s middle name) and a lark (her daughter’s middle name) remind her of her blessings, especially when sadness creeps into her day.

    “We’ve had some really sad cases over the years,” she said. “There are kids I wonder how they’re doing, but luckily I get to do burn camp, so I get to see a lot of kids outside the hospital. It’s wonderful to see them thriving.”

    Thriving is just what Sara Buehler is doing today, according to her mom. Since her discharge, she has returned to the outpatient burn clinic at Riley every three months, but she is nearing the end of those visits. Meanwhile, she has resumed participation in swim club, cross country and track.

    “So many people from our time at Riley stand out,” Christine said (including the nurses and Sara’s surgeon, Dr. Brett Hartman), “but Caitlin will remain in the forefront of our memories because she was such a good friend to Sara during all of it.”

    Dougherty, whose husband, Sam, is a firefighter, is coming off the past two years of the pandemic maybe more than a little exhausted but also inspired by her healthcare colleagues.

    “I feel like we did a really good job holding each other up through all of it.”

    When she leaves work at the end of the day, she leaves knowing that she helped someone that day, no matter how small her part might have been.

    “I do feel like Child Life truly does make a difference for these patients and families, but I also constantly have to remind myself that I am only one person. There will be things I miss, opportunities to provide support that would have been beneficial that I didn’t get to do because I was doing procedures with another child,” she said.

    “That part took me a while to really wrap my head around. We come in and want to do it all and be it all and help every family, and that’s just not possible. So, I focus on what did I do today and how did I make a difference in the time that I had?”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/special-delivery-young-girl-scout-delivers-cookies-to-riley-teams Special delivery: Young Girl Scout delivers cookies to Riley teams 2022-04-19T08:20:00-04:00 2022-04-19T08:42:53-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Harper Jent wanted to spread some love to Riley Children’s Health team members, and she knew just how to do it.

    The 11-year-old Bloomington resident brought 200 boxes of Girl Scout cookies to share with nurses, physicians and administrative staff as her way of saying thank you for their care and kindness when she was a patient in January.

    The sixth-grader, who is followed by surgery, oncology and the pain management team at Riley, sees Dr. Brian Gray and Dr. Tyler Severance. She is an active Girl Scout and somewhat of an overachiever when it comes to cookies sales.

    Two years ago, she sold over 4,000 boxes. This year, she notched just over 3,000 sold.

    Every year, some people who buy cookies don’t actually take the cookies, they just want to support the Girl Scouts. So Harper gives the excess back to a different group each year.

    This year, it made sense to give back to Riley.

    Harper brought 25 boxes to one of her nurses on the ninth floor to share a couple weeks ago, and last week when she came in for an appointment, she delivered another 175 boxes to a team of clinicians.

    Caree Jent said the nurses and physicians took great care of her daughter during a scary time.

    “We were blessed to be at Riley for sure.”

    Dr. Severance called Harper’s donation “an incredibly kind act for an incredible young lady.”

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    https://www.rileychildrens.org/connections/podcast-maternity-matters-obstetrics-emergency-department-supports-moms-throughout-pregnancy PODCAST: Maternity Matters - Obstetrics emergency department supports moms throughout pregnancy 2022-04-18T08:46:00-04:00 2022-04-18T08:53:55-04:00

    Listen to more Maternity Matters episodes.

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    https://www.rileychildrens.org/connections/the-people-of-riley-are-the-reason-my-son-survived “The people of Riley are the reason my son survived” 2022-04-14T08:57:00-04:00 2022-07-29T10:01:35-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Finn Michael Parker Woodiel is a big name for a little guy.

    But baby Finn made quite the entrance when he was born Nov. 29, 2021, at the newly opened Riley Hospital Maternity Tower.

    Parents Ian and Anna were excited to meet their firstborn son, following months of worry about his little heart.

    Anna was just 18 weeks pregnant when her doctors in South Bend diagnosed a serious heart defect in her baby in utero. They immediately put her in touch with specialists at Riley Children’s Health in Indianapolis.

    From the first phone call she received from Riley to schedule a scan, Anna said she felt reassured and supported by the Riley team.

    “I just remember feeling such a sense of relief and reassurance in such a crazy scenario we were thrown into,” she said.

    The Woodiels worked with Riley Maternal Fetal Medicine physician Sherrine Ibrahim throughout the rest of Anna’s pregnancy.

    Little Finn, who was originally thought to have hypoplastic left heart syndrome (a severe congenital defect in which the left side of the heart is underdeveloped), received a slightly better diagnosis after he reached Riley, though it’s still a lot for new parents to absorb.

    His problems included severe pre-ductal coarctation of the aorta (a narrowing of the aorta that forces the heart to pump harder) and a large ventricular septal defect (hole in the heart).

    “I cried for days,” Anna said when she first thought her baby would have hypoplastic left heart. The condition, which she’d never heard of, requires three open-heart surgeries over the child’s first two years of life to correct.

    Learning the slightly better prognosis brought relief, she said, but it was still serious. She made the trip down from South Bend every month beginning when she was about 20 weeks pregnant to get scans and be seen by Riley doctors.

    Finn continued to grow well, and genetic testing revealed no other concerns. Her induction date was scheduled for Nov. 28, and she and Ian returned to Riley just after Thanksgiving to prepare for the birth.

    “The care I got while I was pregnant, I never doubted we were in the best hands,” Anna said. “I felt optimistic about it all.”

    She and Ian handed their little boy over to Riley cardiothoracic surgeon Dr. Mark Turrentine to repair his heart Dec. 7. He was just a week old.

    “Being a first-time parent is wild enough, let alone this,” Anna said.

    But the surgery went well, and the family returned home on New Year’s Eve. Finn sees Riley cardiologist Dr. Erin Davis in South Bend and will return to Indianapolis for surgery to close his VSD in a few months.

    Today, Finn is 4½ months old and developing normally.

    “He is so goofy,” his mom said. “He’s super chatty, especially with his dad. They have their own little language. He’s trying hard to be on the move – rolling around and super wiggly, grabbing for everything including dad’s beard. He couldn’t be sweeter. He’s the best.”

    She is grateful for the care both Finn and she received at Riley, saying she felt supported from Day 1.

    “We cannot express what it's meant for our family to be in such great hands. I'm endlessly grateful for the brilliant minds behind not only Finn's care, but the advancement of everything we know about congenital heart defects,” Anna said.

    “The people of Riley are the reason my son survived and is now thriving. They made us feel supported and hopeful during the scariest and most emotional time of our lives. I have no doubt it will be the same with his next surgery, and we just really owe everything to everyone involved in his care.”

    Riley’s cardiology and heart surgery program is ranked fifth best in the nation by U.S. News & World Report. It is the Midwest’s top-ranked hospital for children’s heart care.

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    https://www.rileychildrens.org/connections/fetal-and-perinatal-imaging-helps-diagnose-conditions Fetal and Perinatal Imaging Helps Diagnose Conditions 2022-04-13T10:35:00-04:00 2022-08-09T14:10:45-04:00 High-resolution fetal MRI allows doctors at the Riley Children's Health Fetal Center to analyze the anatomy and function of vital organs.

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    https://www.rileychildrens.org/connections/rileys-new-maternity-tower-is-personal-to-this-dad Riley’s new maternity tower is personal to this dad 2022-04-13T08:24:00-04:00 2022-04-22T10:45:16-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Josh Ash will be the first to tell you he didn’t design an operating room or build a piece of lifesaving equipment. What he did do is lead a project to make life a little bit better for patients in Riley’s new maternity tower.

    Ash, a project manager for IU Health, worked for the past several months installing a smart television system in the tower so laboring and recovering moms might have a nice distraction while they are inpatient.

    It’s all part of his job, but he also had a personal interest in the tower. His wife, Audrey Brown, gave birth there in late December. Because she has epilepsy, hers was a high-risk pregnancy, and she was followed by the Riley Maternal Fetal Medicine Clinic for several months.

    Delivery at Riley was an intimate affair, she said, just what she needed. There was one physician, two nurses, her mom and husband. The lights were kept low, and noise was kept to a minimum.

    “I felt so relaxed and supported. It’s usually such a high-energy event,” she said, which can often be stressful and intense, like the birth of the couple’s first child in Wisconsin.

    “This felt almost like a home birth. We were just very pleased with the services and all the staff. We were just so fortunate with the care, the monitoring and the high level of communication.”

    And when it was all over? The couple got to enjoy episodes of “The Great British Baking Show” on those smart TVs that Ash worked so hard to get updated.

    “We call it distraction therapy,” Ash said with a smile.

    He is in the process of upgrading all the televisions in Simon Family Tower to the same technology, as well as installing digital white boards in SFT and the maternity tower later this year.

    The digital white board will replace the physical boards in patient rooms that display the date, the care team and any therapies or procedures scheduled.

    With the new technology, nurses can automatically update the white board when they update a patient’s chart in Cerner, the hospital’s electronic health record system.

    “When you’re in IT, you want to focus on making sure the work you’re doing is going to make life easier or better for our clinical staff and our patients,” he said.

    Ash, who enjoys rock climbing and golf in his spare time, worked in the education sector as an IT project manager for a few years before moving to IU Health, where he feels more connected to the healthcare mission.

    With an undergrad degree in psychology, he previously worked in the field of behavioral health. His entire family, he said, “is littered with nurses and social workers,” so he comes by his interest in healthcare honestly.

    He earned an MBA, thinking he might like to go into hospital administration, but he says he’s also been a “computer nerd” his whole life, so that’s where the crossover into IT project management came into play.

    Working on the maternity center project meant a lot to Ash, particularly as he and his wife prepared for the birth of their second child.

    “We always knew we were going to deliver there,” he said, and Brown added, “We knew Riley was the best hospital for us.”

    And now they are busy at home with 4-year-old daughter Edie and 3-month-old son Callum.

    As the sweet chimes rang out in the tower one morning last week notifying all that a baby had just been born, Ash smiled and said, “It’s a lot of fun just knowing I was involved in this project.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    Join our team. At Indiana University Health and Riley Children’s Health, you can grow your career while making a positive difference in patients' lives. For a full list of open roles, click here.

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    https://www.rileychildrens.org/connections/little-luna-charms-her-therapy-team-at-riley Little Luna charms her therapy team at Riley 2022-04-12T09:22:00-04:00 2022-07-22T09:01:13-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Luna Odom packs a lot of personality into her pint-size body. The 10-month-old doesn’t have words yet – though she did just start saying mama – but she expresses herself through squeals, shrieks and sass.

    All of it delights her mom, Rose Odom, and her occupational therapist at Riley Children’s Health, Mary Carter.

    “Hi, Miss Luna!” Carter greets little Luna as they enter the therapy room on the fourth floor of Riley. When Odom warns Carter that Luna is cranky today, Carter laughs. “I’ve had those days myself, sweet girl.”

    The crankiness she came in with disappears when the first toy is introduced.

    Carter has an easy way with her patients and their parents. She chats about goals and milestones while entertaining Luna with a musical train, balls, blocks and a water pad. She encourages her to move into different positions, mindful of the muscles she wants Luna to strengthen and the rotation she wants to see in her torso.

    An occupational therapist at Riley since last October, Carter loves working with Luna’s age group because she gets to see exceptional results.

    “Neuroplasticity – the flexibility of the brain pathways – at this age is so awesome,” she said. “It’s my favorite age group because you see so much progress.”

    Luna was born four weeks early last June at IU Health Methodist Hospital. An MRI showed that one side of her brain wasn’t developing as fast as the other, leading to generalized muscle weakness and developmental delays.

    She required care in the NICU for three weeks, beginning physical therapy and speech therapy even at just a few weeks old to try to “catch her up.” Feeding issues meant she had to go home on a feeding tube, but she pulled that out on her own about six weeks later, her mom said, and has been eating fine ever since.

    Odom recalls that early on, one side of her baby’s body was a lot stronger. “The other side, she almost didn’t know existed.”

    Her developing skills today are a testament to early intervention with physical and occupational therapy.

    “She is making great progress, but she is still behind where she should be,” said Odom, a medical research worker in the IU School of Medicine.

    Carter has been working with Luna weekly for several months. She has been amazed to watch her progress but says she wants to see her patient meet all of her age-appropriate milestones and maintain them for several months before she discharges her.

    A follow-up MRI to track her brain development is scheduled for June.

    Early on, Luna couldn’t focus her eyes and wouldn’t make eye contact. That has changed though, as she watches everyone in the therapy room very closely, especially the man with the camera.

    She is definitely ready for her closeup.

    “When I first met Luna, she was just beginning to track toys with her eyes,” Carter said. “Now she is reaching for toys, grabbing them, using both hands and bringing them to her mouth.”

    Luna used to prefer being ramrod straight; she had trouble bending her arms and legs. Her mom likened her to a starfish when she picked her up.

    Joint compression exercises targeting neural pathways address her sensitivity to touch, Carter said, adding that she continues to work with Luna on tummy time and pivoting.

    Luna was showing off her skills during therapy, raising herself on all fours at one point.

    She started sitting up on her own about six weeks ago, her mom said, but she wasn’t independently mobile until a couple of weeks ago.

    When Carter asks how her “creeping” is going at home, Odom tells her Luna is basically moving in circles.

    “She can roll back and forth, front to back, all over the place.”

    Luna has two older siblings, so she’s learning by watching them too.

    “Our goal is for her to crawl for her birthday, and I’m OK with that,” Odom said. “I didn’t think we were ever going to get to it, but almost overnight she decided she could get up on all fours.”

    Luna works so hard at “playing” during OT, she usually falls asleep on the 20-minute drive home, her mom said.

    Carter, who did a student rotation at Riley when she was in school, knew she wanted to work here. She started out her career working with First Steps, but when a position at Riley opened, “I jumped on it.”

    It’s patients like Luna and parents like Odom that remind her why she wanted to be here.

    “I’m just very proud of all the progress she’s made in OT and so proud of the family too for carrying over all of our therapy at home.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/celebrate-youre-going-home “Celebrate, you’re going home!” 2022-04-07T11:03:00-04:00 2022-04-11T10:08:42-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    It was a festive mood on the stem cell unit at Riley Children’s Health on Wednesday, as 6-year-old Levi Galvez finished a 40-day inpatient stay following a stem cell transplant.

    Levi and his dad, Geovani, who donated his own bone marrow and never left his son’s side after the transplant, were ready to head home, but not before a celebration singalong, courtesy of the fifth-floor team members.

    “Celebrate, you’re going home!” they sang to him, encouraging him to break through the ribbon tied across the hallway. Levi has his own way of doing things, however, so he just ducked under the ribbon.

    Regardless, he is going home. There, he planned to play with LEGOs and try out his new toy vacuum. Levi had his Riley wagon jam-packed with the toys, blankets and supplies he had accumulated over the 40-day stay. In fact, it was packed and ready to go the night before discharge.

    As his dad took in the moment, he said he was feeling thankful above all else.

    “I remember when we found out he was going to need a transplant and I met his stem cell physician for the first time,” Geovani said. “I asked her (Dr. April Rahrig) if she would do this for her child, and she started crying and said yes. She’s wonderful. She took great care of us.”

    From that moment, he said, he felt a sincere connection with Levi’s care team.

    “I’m grateful we were able to come this far. I really appreciate the fact that everybody took the best care possible of him.”

    That includes Levi’s dad, too.

    Levi with his father leaving Riley Hospital for Children

    Geovani almost wasn’t around to help save his son from the leukemia Levi has been battling since he was just 2 years old. Geovani, who works in the emergency department at IU Health Methodist Hospital, tried to take his own life last summer.

    He was saved by his own colleagues and continues to give thanks for their care and the counseling that has helped give him the strength to be there for his son.

    The inpatient stay wasn’t without sickness and stress, Geovani said, but today, his cells are 100% engrafted and making healthy blood cells in his son, giving him another chance at a life free from cancer.

    Asked if he felt like Superman, Geovani smiled and said, “I feel extremely grateful. There are children who don’t make it. I’m grateful for his health, his strength and especially for the staff here.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    Previous stories:

    He tried to take his own life. Now he is saving his son - Geovani Galvez lacked purpose and hope that July day when he shot himself. Seven months later, he is donating bone marrow to help his little boy beat leukemia.

    Keeping watch over his son - Geovani Galvez hasn’t left his 6-year-old son’s side since the boy received his dad’s donated bone marrow last week.

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    https://www.rileychildrens.org/connections/books-help-tell-their-story-about-life-in-the-nicu Books help tell their story about life in the NICU 2022-04-06T14:41:00-04:00 2022-04-06T17:08:36-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    As her tiny daughter lay in the NICU shortly after birth, Holly Diethrich didn’t know what to do. She desperately wanted to create a tiny slice of normalcy for her baby girl, so she took the nurses’ advice and began to read to her.

    As the minutes ticked by and the days melted from one to the next, the new mom kept reading – book after book, hour after hour.

    “The next several weeks, we didn’t know what was going to happen, and it was reading those books to my baby in the NICU that was the only piece of normal,” she said.

    “My baby should be home. I should be reading her books, dressing her in cute little outfits,” she told herself in those early days after Cora Diethrich was airlifted from a hospital in Terre Haute to Riley Children’s Health just hours after her birth.

    “That was the one little piece of home that I was able to share with her in those really emotional and intimate moments in the first several weeks.”

    Four years later, Cora is a happy, healthy preschooler with a giving heart. That heart was on full display last week when she and her mom delivered more than 150 children’s books to the Riley Cheer Guild so, in Cora’s words, “other mommies can read to their babies.”

    Cora asked for donations of books to celebrate her birthday in February. Her mom expected maybe 50, but “they kept coming and coming,” Holly said.

    Last Wednesday, mom and daughter reunited with members of Cora’s care team to drop off the books, including some of her favorite titles like “Arnie the Doughnut,” “Carla’s Sandwich” and “Animalia” and Holly’s favorite, “You’re Here for a Reason.”

    “I still can’t read that last one without getting choked up,” Holly said.

    The tears still come when she talks about the weeks that Cora spent in Riley’s NICU, first undergoing a lung surgery and several related procedures, all performed by Dr. Matt Landman, director of trauma at Riley.

    Dr. Landman was on hand for last week’s book donation, along with flight nurse and NP Heather Bruckman, whom Holly entrusted with her daughter’s care in those emotional hours after her birth, and nurses Jennifer Welcher and Tori Thomas.

    “We were blessed to be met by the most wonderful care team. Heather was put into our lives for a reason, said Holly, recalling how scary it was for her to let her newborn leave the hospital without her.

    Bruckman reassured her: “Mom, I will take care of your baby as if she is my own. We will meet you there. I will hold her, I will be with her, I will never leave her side until you are reunited with your baby.”

    And she kept that promise, waiting with Cora until Holly arrived by car.

    Today, she and her daughter keep the entire team in their hearts.

    “Dr. Landman is wonderful and still stays in touch with Cora. We relied on him and Dr. Brian Gray – they’re all so wonderful and still in our lives,” she said.

    “It’s very important for us to maintain and nurture the relationships we have with our Riley family. The little things meant so much to me while I was there, and we want to be able to help another mom and another family to feel those little pieces of home.”

    When you’re in the middle of a situation like that, she said, you often don’t know what questions to ask. You don’t know what you need.

    “The nurses told me to read to her and explained the importance of her hearing my voice and knowing I was there,” Holly said. “Reading still connects us. We read five books a day – two books at breakfast, one at dinner and two at bedtime.”

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    https://www.rileychildrens.org/connections/ninjas-work-in-the-shadows-to-keep-riley-kids-safe “Ninjas” work in the shadows to keep Riley kids safe 2022-04-06T08:47:00-04:00 2022-06-27T10:53:26-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    In a world of “smart bugs” and wily germs, a team of Riley Children’s Health physicians and pharmacists wage battle daily on behalf of Riley patients and families.

    “We’re kind of ninjas working in the background,” said Riley clinical pharmacist Michelle Kussin. “As a patient, you might not see us come to the bedside, but we’re always there supporting your team, reviewing your antibiotics, making sure that you’re getting the right thing.”

    The focus of this team’s behind-the-scenes work is ensuring the safety and efficacy of antibiotic/antimicrobial use in patients. Antimicrobials encompass antibiotics, antifungals and antivirals (think remdesivir, used against COVID-19).

    Because of the team’s diligence, innovation and leadership, Riley has been awarded the designation of Antimicrobial Stewardship Center of Excellence by the Infectious Diseases Society of America.

    It’s a mouthful, we know, but it’s another feather in Riley’s cap, evidence of the hospital’s commitment to safety and excellence in the care of children.

    “Something we try to emphasize is, of course, antibiotics have great benefits when indicated and used appropriately,” said Kussin, who works with Riley’s Infectious Diseases department and is co-director of the Pediatric Antimicrobial Stewardship Program.

    “But when they’re overused, when an antibiotic is not actually going to help that patient’s symptoms or when the wrong antibiotic or the wrong duration is chosen, really there are a lot of side effects to not only that patient, but the whole community,” she explained.

    That’s because germs are tricky. They get smart, Kussin said, so the more you use an antibiotic in the community, the more those germs in that household, that neighborhood or that region become resistant as a population, so they’re no longer killed by those same antibiotics.

    “It’s OK to ask your provider, do I really need this antibiotic, or what side effects should I be looking for,” she said.

    Dr. Jack Schneider, medical director for the stewardship program within the Ryan White Center for Pediatric Infectious Diseases and Global Health, wants families to know why this recognition should matter to them.

    “For those families who come into Riley, I think they should feel confident knowing we are recognized for the way we prescribe our antibiotics and antimicrobials,” he said. “Antibiotics can be harmful and that’s why we have to be judicious in how we prescribe them for certain infections.”

    This distinction should reassure parents that if antibiotics are indicated for their child, measures are in place to ensure the appropriate medication is chosen at the optimal dose and duration, he said.

    “Riley and IU Health are dedicated to equipping the diagnostic microbiology lab with the most advanced testing platforms to detect pathogens sooner,” he said. “Thanks to our practices and policies, patients are getting better faster with fewer side effects. And we are preserving our current antibiotics so that future infections can be appropriately treated.”

    The stewardship team, which also includes infectious disease physicians Samina Bhumbra and John Christenson, monitors prescribing practices, current resistance rates, and standardized treatment guidelines for patients with certain infections.

    “We really engage with all of our specialty teams here and help educate providers to choose and prescribe the right antibiotic, at the right dose and for the right duration – all based on the most up-to-date treatment practices,” Dr. Schneider said.

    He adds that antimicrobial resistance is among the biggest threats to global health today.

    Dr. Elaine Cox, chief medical officer for Riley and a former infectious disease physician, was the first stewardship director for Riley a decade ago. She has continued to support the group’s initiatives from a leadership role, which Dr. Schneider appreciates.

    When he took over as medical director of the antimicrobial stewardship team in 2020, he realized that Riley had the potential to achieve Center of Excellence status in the eyes of the Infectious Diseases Society of America, making it one of 10 pediatric hospitals in the world with the designation, he said.

    While many aren’t aware of the stewardship program and its focus on proper prescribing, tracking and education on the use of antibiotics and other medicines, the recognition is “a reflection of the collaborative efforts of many specialties here at Riley,” Dr. Schneider said. “They all work closely together to develop and implement a variety of initiatives to really combat antimicrobial resistance and just really provide overall better care for our patients.”

    Kussin said the seal of excellence should reassure families that their child is receiving the best care at all levels while at Riley. While their individual care team – be it heart, cancer or any of Riley’s top-ranked specialties – will have experts in that field, infections can affect any patient, and right-size care when it comes to antibiotics and other medicine makes a difference.

    “Our expertise comes with them to whatever service line they may be coming to Riley for,” she said.

    However, she cautioned, antibiotics will NOT make you feel better if you have:

    • Common cold
    • Runny nose
    • Flu
    • COVID-19
    • Sore throat (except strep throat)
    • Mild ear infections

    They can, in fact, make you feel worse if adverse effects like diarrhea, tingling of the hands and feet, rash, allergic reactions and sensitivity to sunlight kick in.

    Many parents are trying to be great advocates for their kids, and they think, “I’m not walking out of here without amoxicillin,” Kussin said. But if it’s a virus, an antibiotic will have zero effect.

    That’s why educating parents at the point of care is so important to head off those emotionally charged conversations when a child is ill.

    COVID, of course, created new challenges for healthcare workers, including those whose duty is to ensure that the right medicines are being prescribed.

    “As hospitals continue to respond to the COVID-19 pandemic, we are reminded that antimicrobial resistance threatens our ability to treat patients each and every day,” said Dr. Barbara Alexander, president of the Infectious Diseases Society of America.

    “IDSA continues to prioritize fighting antimicrobial resistance through research, education, training and policy initiatives. Our Centers of Excellence program recognizes hospitals that are joining us in that fight.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/podcast-maternity-matters-art-therapy-provides-additional-support-to-families-in-the-riley-maternity-tower PODCAST: Maternity Matters - Art therapy provides additional support to families in the Riley Maternity Tower 2022-04-05T08:04:00-04:00 2022-04-05T09:32:02-04:00

    Listen to more Maternity Matters episodes.

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    https://www.rileychildrens.org/connections/view-the-mfm-clinic-and-fetal-center View the MFM Clinic and Fetal Center 2022-03-31T10:20:00-04:00 2022-05-25T11:12:29-04:00 A new look space helps reduce maternal and infant mortality rates in Indiana.

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    https://www.rileychildrens.org/connections/podcast-maternity-matters-a-new-way-to-care-for-babies-at-risk-for-withdrawal PODCAST: Maternity Matters - A new way to care for babies at risk for withdrawal 2022-03-22T08:43:00-04:00 2022-03-22T08:49:43-04:00

    Listen to more Maternity Matters episodes.

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    https://www.rileychildrens.org/connections/baby-winston-is-raising-the-roof-in-the-maternity-tower-nicu Baby Winston is “raising the roof” in the maternity tower NICU 2022-03-20T18:24:00-04:00 2022-03-28T13:23:33-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    This is not how Hanna Dickison imagined the birth of her first child.

    The Danville woman and her husband, Matthew, expected their little boy on May 10, right around Mother’s Day.

    Instead, Winston Douglas Dickison entered the world March 3, 10 weeks premature and weighing 3 pounds, 14 ounces.

    Lucky for him and his parents, he was born in the new Maternity Tower at Riley Children’s Health, where both he and his mom could get the specialized care they needed.

    Baby photo of Winston Douglas Dickison in the hospital

    Hanna’s pregnancy was proceeding uneventfully until a visit with her obstetrician, Dr. Edmund Gomez at IU Health West Hospital, where she intended to give birth.

    “We absolutely never expected to be in this position,” Hanna said, recalling how she had gone for a routine OB visit March 2. Little did she know she would be giving birth the next day.

    SIGNS OF PRE-ECLAMPSIA

    Her doctor was already watching her blood pressure because it had been high. Then her blood work showed slightly elevated liver enzymes. When she saw Dr. Gomez on March 2 to get a follow-up blood draw, she told him she was having headaches.

    Her symptoms were in line with a serious pregnancy complication called pre-eclampsia, characterized by high blood pressure and signs of damage to another organ system, most often the liver and kidneys. The condition can lead to serious, sometimes fatal consequences for mother and baby.

    Dr. Gomez wasted no time in having Hanna admitted to the hospital for monitoring, and it was shortly after that when she was transferred to Riley, where the NICU would be better prepared to care for her baby if she ended up delivering early.

    Her condition worsened after she arrived at Riley, so she had an emergency C-section almost before she knew what was happening.

    It was a whirlwind of emotions for the young couple, who just a few days earlier had closed on the purchase of a new house. They figured they had plenty of time to pack and get settled before little Winston arrived.

    Instead, family and friends are helping them pack, while they travel back and forth to Riley. As hard as it has been, Hanna said she is grateful to be at Riley.

    “The care we’ve received has been phenomenal. I told my husband when we found out we were pregnant that if, God forbid, anything happened and our baby needed extra care, Riley was where I wanted him to be.”

    That’s because when Hanna was a child, she was in a car accident and was LifeLined to Riley.

    “I know how they treated me when I was terrified. That one visit was all it took for me to know that this is the place my kids have to go for anything serious.”

    Still, she never thought she would be here right now.

    Hanna remembers one glorious thing from the birth experience – the sound of her baby’s cry. It convinced her that Winston was a fighter.

    She recovered at Riley for just under a week, and during that time it was comforting to know that her little boy was just one floor above her.

    “It was extremely nice that I was able to have him close by so that through my recovery I could be rolled up to the NICU to see him,” she said. “I didn’t have to worry about my husband being at one hospital and taking pictures and that be the only way I could see him. That helped tremendously with the emotional aspect.”

    RAISING THE ROOF

    Two weeks after his birth, Winston is gaining weight and learning to regulate his body temperature. On Thursday, nurse Kiahna Shelton said her little patient was doing so well his care team was able to “pop the top” on his temperature- and humidity-controlled incubator.

    Winston in his incubator at Riley Children's Health

    “I’ve had him the past three days and got to watch him come down on his respiratory support,” she said. “Once they show they are controlling their own temperature and the box isn’t heating up as much, we can pop the top.

    “He’s raising the roof already,” she laughed. “He’s super snuggly. He’s just little and perfect.”

    Winston ditched his CPAP mask a few days ago and is doing well with a smaller amount of breathing support via a nasal canula. Once he is able to come off respiratory support, he’ll be ready to start trying out bottle feeds, rather than the tube feeds he currently receives.

    As Hanna cuddles with her newborn, she talks about his Winnie the Pooh-themed room at home – currently a work in progress – and his feisty personality.

    “I told my husband he’s going to be a handful,” she said with a smile. “He was always pulling his mask off and making the machines beep.”

    LEARNING FROM EXPERTS

    Being a first-time parent is scary enough, Hanna said, without this added stress, but she and Matthew also get the benefit of expert training in the care of their baby by Riley nurses and physicians like resident Dr. Anna Cole, who has been monitoring Winston’s progress.

    “Everyone here is absolutely amazing, and the tower is beautiful,” Hanna said.

    Hanna takes care of baby Winston at Riley

    Still, she acknowledges it’s hard leaving the hospital without her baby, though she appreciates the extra space in his room and the pull-out sofa that makes it easy to stay overnight when she can.

    “It’s nice when I can’t find the strength to get myself home to pack, I can just pull that out and sleep and have my pump and everything I need to be able to stay with him.”

    “I have all the confidence in the world in his team, but at the end of the day, I’m still his mom so it’s scary to leave. But just the way the nurses talk to my husband and me when we’re there, the updates they give … they are constantly taking care of him and asking us what they can do for us to make us comfortable.

    “I remind myself every time I’m leaving that they’ve got him, they’re good people, and they know what they’re doing.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/retro-riley-one-young-girl-one-courageous-heart Retro Riley: One young girl, one courageous heart 2022-03-17T08:17:00-04:00 2022-04-11T09:48:51-04:00 Bailey Hunsberger lived all her life with a courageous heart. Born in 1992 with aortic stenosis, a defective aortic valve that allowed blood to back up into her lungs, Bailey was only 3 days old when Riley Hospital Heart Center surgeon Dr. John Brown performed her first open heart surgery. She was only 4 years old for her second, again done by Dr. Brown.

    Both surgeries bought Bailey time and a chance for a happy, normal life up until 2005 when her heart began to fail. There were not too many options at that point for Bailey – another surgery to remove scar tissue, and if that didn’t work, a heart transplant. Riley heart surgeon Dr. Mark Turrentine saw one more possibility – a Berlin Heart.

    Developed in Germany, the Berlin Heart – a 15-ounce mechanical pump – would give Bailey’s heart and lungs a chance to rest until she was strong enough for a transplant. The ventricular assist device (VAD) restores normal blood flow and acts as the heart’s main pumping chamber.

    Riley surgeons opened Bailey’s chest, removed the scar tissue in her heart and attached the device. The pumping chamber stayed outside Bailey’s body, where she was able to watch her blood moving to and from her heart. Bailey predicted to her doctors: “I think I know what's gonna happen. I think I'm gonna need the Berlin Heart and they're gonna put me on it and my heart is gonna get better, and they're gonna take me off it." And she added, “I'm gonna help lots of kids in the process.”

    Wouldn’t you know, Bailey was right. The 12-year-old was hooked up to the Berlin Heart for 162 consecutive days at Riley Hospital. And then, Dr. Turrentine called her family together to deliver news nothing short of a miracle: Bailey’s heart and lungs had healed enough to take her name off the heart transplant list. A few days later, the Riley Heart Center team removed the mechanical device, and Bailey’s heart began beating on its own.

    Bailey's childhood photo

    Bailey’s courage throughout this process was chronicled in an award-winning documentary, “Heart to Heart.” Bailey described the Berlin Heart in the film this way: “It’s breakthrough medicine that will help a lot of people with my condition.”

    The documentary sparked awareness and action on behalf of children for access to medical technology and devices to save their lives and helped set into motion a multicenter clinical trial at nearly a dozen leading children’s hospitals (including Riley Hospital for Children) to evaluate use of the Berlin Heart with pediatric patients.

    In 2011, when Bailey was a sophomore at Indiana University, she and her family and a team from Riley Hospital’s Heart Center testified at the FDA hearings, which ultimately led to FDA approval of the Berlin Heart. When Bailey got the call from Riley that the Berlin Heart had been approved, she said, “That was the most exciting thing I’d heard in a very long time. It felt like an early Christmas gift.”

    Bailey continued to live her life with a courageous heart and desire to help all children through pediatric research. After graduating from Indiana University with a degree in microbiology, she launched her career as a microbiologist at Riley Hospital’s Herman B Wells Center for Pediatric Research. She joined colleagues there in carrying out research and as a co-author on several publications.

    Dr. Troy A. Markel, director of Pediatric Surgical Research at Riley Hospital for Children, recalls Bailey, the first technician he hired for his lab: “She was enthusiastic about her job and took great pride in her work. She often mentioned that this pride came from the abundant research that others did before her to save her life, and she was hoping to be able to provide the same benefit to other children.”

    Bailey married U.S. Marine Cpl. Lance Worthen in 2015. Two years later, at the age of 25, she passed away.

    Bailey’s courageous heart lives on in the memories of her family and friends and in those patients whose lives she helped save. Her story is a testament to the courage of Riley Hospital patients and their families and to the caring and expertise of the medical team. Today, many children throughout the United States and the world have been able to benefit from lifesaving outcomes through the use of the Berlin Heart.

    Research by Riley Hospital Historic Preservation Committee

    Photos courtesy of Riley Children’s Foundation and Robert Rothrock, Visual Media/IU School of Medicine

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    https://www.rileychildrens.org/connections/circling-the-wagons-for-team-mason Circling the wagons for Team Mason 2022-03-15T08:01:00-04:00 2022-04-04T09:31:05-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Mason Patton was a son, a brother, a friend and a father.

    He also was a two-time kidney transplant recipient who spent his early years being treated for kidney disease at Riley Hospital for Children.

    Monday marked the eighth anniversary of Mason’s passing at the age of 38.

    He might have been a grown man and a dad, but to Denise and Mark Patton of Crawfordsville, he was their little boy. The same boy with the goofy sense of humor and sunny disposition, never mind his illness.

    Riley Children's Foundation Wagon Plate

    It was fitting then that Monday was a gorgeous day in Indianapolis. Under sunny skies, a new Riley wagon was launched into service in the name of Team Mason – the family and friends who have kept his memory alive and raised an astonishing amount of money – well over $100,000 – over the past decade for kidney patients and families.

    Danielle Shaw, with Riley Children’s Foundation, said the red wagons are synonymous with Riley, going back a half-century.

    “It’s such a special thing for our patients and families,” she said. “It’s a happy memory from something that can be really difficult. We are so grateful for families like yours who want to give back in a really beautiful way.”

    Shaw shared that she will be donating a kidney herself in a few months, so she understands the passion the Patton family has for kidney donation awareness.

    March is National Kidney Month.

    Mason was fortunate to live a fairly normal childhood, despite the Alport syndrome that attacked his kidneys. He was five days shy of his 21st birthday when he underwent his first transplant at Indiana University Hospital (before it was part of IU Health).

    Mason blows out the candles on his birthday cake

    His buddies celebrated by bringing tiny bottles of alcohol to his room (that would remain unopened). His sister, Katina, presented him with a birthday cake in his hospital room.

    The kidney, donated by his Uncle Mike Patton (who was on hand for the wagon presentation Monday), lasted about 10 years.

    Not long after the surgery, Mason and his uncle were in Hilton Head when some girls who were collecting shells commented on the scar that ran from Mike’s stomach around to his back.

    Mike told the girls he had gotten into a fight with a shark, which suitably impressed them. Today’s transplant scars are a fraction of the size of those earlier ones.

    Mason needed dialysis for a couple of years before he received a second kidney from his cousin. Unfortunately, that kidney lasted only a short time.

    The family formed Team Mason two years before he passed away.

    “We decided we would do our best to give back to whoever has helped us in the past and whoever needs help in the future,” Denise said.

    That includes Christmas gifts for Riley dialysis patients and those in Crawfordsville, where Mason received treatment. The Pattons also started a dialysis library in Crawfordsville because Mason was a big reader.

    “It’s from our hearts, and it really helps us to help them,” Denise said.

    Raising money for a Riley wagon made sense, she said, because she remembers using them when Mason was a little boy, and she wants other kids to have that simple pleasure.

    Her mama heart has never truly healed, but she finds comfort in helping others in her son’s name.

    “We loved him to death. He had such an old soul, and he never complained. It’s really hard without him.”

    In Mason’s honor and to raise awareness of the need for living kidney donors. David McCartney, a member of Team Mason, donated a kidney to a stranger three years ago. McCartney, who was featured in People magazine and on “60 Minutes,” is running races in all 50 states to encourage people to “share their spare.”

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    https://www.rileychildrens.org/connections/podcast-maternity-matters-ob-icu-provides-highest-level-of-care PODCAST: Maternity Matters - OB ICU provides highest level of care 2022-03-14T08:20:00-04:00 2022-03-14T08:25:47-04:00

    Listen to more Maternity Matters episodes.

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    https://www.rileychildrens.org/connections/heart-surgeons-vacations-are-spent-saving-lives Heart surgeon’s vacations are spent saving lives overseas 2022-03-10T13:59:00-05:00 2022-03-10T14:39:27-05:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    For Dr. Mark Turrentine, a trip to the beach can wait.

    So can cleaning out his garage.

    Instead, the longtime cardiothoracic surgeon at Riley Children’s Health prefers to spend his “vacation” time working – saving kids across the globe who might not otherwise survive.

    He and a team of Riley specialists just returned from a medical mission trip to Amman, Jordan, where they operated on a dozen children – some from Iraq, some from Jordan and some living in refugee camps in the Middle East.

    It is the 32nd trip he has made to Jordan over the past 15 years, but just the second since the pandemic shut down travel two years ago.

    He quietly chuckles when asked about the last true vacation he took.

    “Define vacation,” he said, during a break between surgeries at Riley this week.

    “My time away from Riley is spent doing this. This is like a vacation for me – it’s time away and it’s time away doing something that is meaningful. And you see interesting people and interesting places. What else is a vacation? So what if you work hard while you’re there.”

    It’s hard to argue with the renowned surgeon, who has mended many a broken heart during his three decades at Riley but would just as soon fly under the radar than be in the spotlight.

    For him, these trips are about giving hope to parents who might otherwise have none.

    “It’s pretty meaningful to see something good happen for families that are fairly desperate to have something good happen to them.”

    Riley pediatric cardiologist Dr. Anne Farrell, who also traveled to Jordan last week and has gone on previous trips, agrees.

    “Being able to affect kids’ lives so dramatically – when they otherwise have no chance – is really rewarding,” she said.

    She shared the story of Danial, who traveled from Iraq with his mother. He was so weak and cyanotic that he was unable to walk before surgery, Dr. Farrell said. Two days later, he was kicking a soccer ball down the hospital hallway as his mother took a video of him.

    “That’s lifechanging,” she said.

    Parents and children alike are grateful, Dr. Turrentine said, adding that he was able to reunite on this trip with one of the first children he operated on in Amman back in 2008.

    That child, now a teenager, came to see the surgeon last week just to say thank you.

    “It’s nice that they want to do that,” he said. “It’s interesting that the kids seem to have a connection. They know about this person who operated on them and for whatever reason, they look forward to meeting them.”

    The reason is clear, of course. As the years pass, those children have heard the stories from their parents about how their lives were saved.

    In a way, these families have hit the lottery, Dr. Turrentine said. They are the lucky ones, the ones whose kids born with serious heart defects now have a chance to see their next birthday.

    In the two weeks leading up to this trip, Dr. Turrentine evaluated about 35 potential patients for the 10 to 12 operating slots, and that’s only a handful of the requests that come through every year. It’s always a difficult process to choose who gets treatment – made harder by the realities of geography, travel and overall risk to the patient.

    “I would say of the kids we’ve operated on over there, I don’t know if it would be an overstatement that maybe 80% or 90% of them might not have gotten care if teams like this weren’t going over there,” he said. “Particularly the ones out of Iraq and out of refugee camps. They don’t have access to too much.”

    Funding partners like Rotary Club/Gift of Life Greenfield, the Josh Lindblom Foundation and Chain of Hope London continue to make the lifesaving missions possible. But the teams that go are donating their time.

    Others who participated on this trip included Dr. Mouhammad Yabrodi, who specializes in pediatric cardiology and critical care medicine; CVICU nurse Sheila Rocchio; and cardiothoracic surgery fellow Dr. Maha Alkhuziem.

    It was a relatively small team this year, due to the risk of COVID, so Dr. Turrentine tried to balance the complexity of cases with the capability of the hospital team in Amman and the capacity of the Riley team.

    “I’m really proud of the group that goes,” he said. “I’m just always very proud to travel with the Heart Center team on these trips because no one could imagine how hard they work and the passion they have for it.”

    Don’t ask him how long he is going to keep doing this work. He has no answer yet. As long as there are community partners willing to support the missions and Riley team members willing to go, he will continue.

    The garage will just have to wait.

    Photos provided by Dr. Anne Farrell

    Related stories:

    Dr. Turrentine on medical mission trips: "Service above self" - Interest in global humanitarian work began in the late 90s for Dr. Mark Turrentine, cardiothoracic surgeon and division chief at Riley Children's Health. In 2007, he and a team went to Amman, Jordan. Now, he makes four or five trips each year to Jordan and Lebanon.

    Leading with their heart in Jordan - Riley team led by Dr. Mark Turrentine returns to save lives in the Middle East for the first time since March 2020.

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    https://www.rileychildrens.org/connections/engineering-team-ensures-smooth-delivery-at-new-maternity-tower Engineering team ensures smooth delivery at new Maternity Tower 2022-03-10T08:45:00-05:00 2022-04-11T09:46:52-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    The clinical engineering team at Riley Children’s Health might be a behind-the-scenes team operating out of the basement, but the group’s work took center stage recently during the opening of Riley’s new Maternity Tower.

    The 15-member team was honored recently as winners of the TRIMEDX team values award of excellence for helping to orchestrate and facilitate the massive move involving team members and equipment from IU Health Methodist Hospital and Riley.

    TRIMEDX manages the clinical engineering department at Riley and other IU Health hospitals, in addition to hospitals around the country.

    “We were happy and proud to see how the team took ownership,” said Lisann Goodin-Burton, systems director for clinical engineering. “This team continues to serve with compassion and deserves to be recognized as one of the best for its effort and commitment to excellence.”

    CE team stand out in front of the Maternity Tower

    Riley’s new 140-bed Maternity Tower opened Sunday, Nov. 7. The project included moving and expanding the existing labor and delivery and neonatal intensive care units from Methodist to Riley, in addition to opening four surgical suites, a high-risk obstetrics unit and two floors of postpartum recovery suites.

    For months leading up to the move, the CE team was powering on all cylinders to get everything online and ready for the big day, ensuring that patients had the best experience possible.

    That involved installing thousands of pieces of equipment and devices, while also troubleshooting and resolving workflow and safety issues.

    “It’s so cool to be a part of history like this, and for hospital leadership to recognize the impact that our team made is huge because we work behind the scenes,” said Mike Zippay, senior site manager.

    “Even the weekend of Go Live, while the moms and babies were being transported here, simultaneously in the basement, we were unloading truckload after truckload of gear and getting it inspected and ready for them.”

    Zippay, a father of four himself, was most proud of the fact that every member of his team volunteered to work that weekend to ensure a safe opening of the new hospital wing, not only for moms and babies but for team members as well.

    A few days after the opening, the Riley clinical engineering team was honored to raise the state flag for the first time outside the main entrance to the Maternity Tower.

    “The main thing is that we weren’t trying to win an award,” said senior technician Paul Franklin. “This is how we approach our jobs every day.”

    That commitment is obvious, Goodin-Burton said.

    “We could not be more proud of this team and the work they are doing to serve the mothers, babies and children at Riley Children’s Health.”

    While proud of his team, Zippay gives a shout out to other departments as well, including supply chain, information technology and facilities engineering.

    “So many support services departments that a lot of people don’t think about did just tremendous work,” he said. “It was really fun to collaborate with all those teams.”

    And the clinical leadership coming from Methodist, he said, is a fantastic group.

    “Anybody who comes here for care, they’re in really great hands.”

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    https://www.rileychildrens.org/connections/children-matter-beyond-their-size-let-them-sparkle “Children matter beyond their size. Let them sparkle” 2022-03-09T14:11:00-05:00 2022-04-06T11:01:07-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    As a pediatrician, Dr. Eric Yancy understands the seriousness of childhood obesity.

    As a person who has struggled with his own weight for most of his life, he also understands the disservice we do to children when we focus on weight alone.

    “Children matter beyond their size!” the Riley Children’s Health physician wrote in a Facebook essay, prompted by a conversation he recalled with a mom whose child was overweight.

    “I see overweight kids every day, but the whole conversation was about her weight,” he said when asked why he felt compelled to write what he did.

    “What else is this child besides her weight,” he asked. “If that’s all you’re going to focus on and the child is deemed otherwise worthless, then why would the child have any impetus to do anything different?”

    Nearly 30% of kids in Indiana are considered overweight or obese, so it’s not something to ignore. And Dr. Yancy is not suggesting that. Rather, he wants to shine a light on the inherent value of all children, regardless of size.

    HE HEARD THE SNICKERING

    “Suppose you wake up one day and you find that you are a little fat kid. You don’t realize it then, but you are about to become one of the most bullied children in your whole school,” he writes in the essay. “In playground games you will be picked last, and the team captains will argue about who has to take you. At the movies the kid that looks like you will never be the hero. Adults and even teachers didn’t realize you heard them laughing when you took the fitness test. Then imagine that they blame it on YOU.”

    Dr. Yancy acknowledges speaking from experience. Growing up in Baton Rouge, La., he remembers the snickers from teachers and the teasing from other kids.

    “When I was growing up, it was only one or two kids in the class (who were overweight). But I was one of those,” he said.

    “Does anybody see you for what your value is?”

    Lucky for him, he had other things going for him that allowed him to stand out beyond his size. He was an excellent student and a talented singer, and he loved to perform on stage.

    He did, however, get tired of being asked to play roly-poly characters like Santa Claus.

    He also had a family that supported him always.

    Still, how did he get past the hurt as a child?

    “I don’t think I did. I don’t think I totally did,” he said. “I still deal with some of that today, some of those feelings. I didn’t get too depressed because I had other things going for me, but it didn’t really take away the sting of people laughing at you.”

    Dr. Yancy says he came out of the experience pretty well, but a lot of kids don’t.

    Dr. Yancy graduation photo

    “It’s not reasonable to harp only on what you consider a child’s shortcomings when in almost every instance they had nothing to do with it. The kids can’t go buy the food, and the kids can’t prepare the food. Sometimes the parents can’t buy the healthy food because they’re in food deserts.”

    Kids who look in the mirror and see only what others say is wrong with them feel powerless, which can lead to depression, self-harm and other serious mental health issues.

    “We many times fail to see the child. We only see the weight.”

    “FIND THE PRECIOUS DIAMOND”

    That’s why Dr. Yancy counsels his patients and parents on healthy eating and exercise habits, but also encourages them to focus on the wonder of who they are – maybe they are a talented artist or they love music, he said. Build on that connection so a child knows he or she is more than their size.

    Dr. Yancy smiles and holds a child

    “Find the precious diamond hidden inside the oversized box. Let them sparkle, because THAT is where the true value lies!”

    The husband and father of three grown kids still remembers the hurtful words from so long ago, and he wants to spare today’s children from some of that pain. Not by ignoring what can be a serious health challenge, but by validating the child’s worth in other ways.

    “People mean well, but I think what they miss is if every effort is geared toward changing you, then by default you have said I’m not good enough.

    “That doesn’t mean you can’t do things to help, but you have to keep in mind that this person is first a child so their weight problem is not what should define them. Their inner child should define them. And I think that’s what a lot of people miss.”

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    https://www.rileychildrens.org/connections/keeping-watch-over-his-son Keeping watch over his son 2022-03-08T14:32:00-05:00 2022-04-04T09:08:50-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Geovani Galvez watches as his son sleeps, clutching his stuffed animals Macchiato and Luigi. In the quiet, Galvez thinks about his hopes and dreams for Levi, 6.

    Maybe he’ll become a police officer. Or a chef. Or a LEGO master.

    Levi is recovering from a stem cell transplant at Riley Children’s Health. It is the latest attempt to save the boy from the blood cancer that continues to threaten him, four years after it was first diagnosed.

    Galvez smiling with his son, Levi

    Galvez, 29, donated 1 to 2 quarts of his own bone marrow in a procedure last week designed to encourage his son’s body to create new, healthy blood cells, thereby strengthening the kindergartner’s defenses against acute lymphoblastic leukemia.

    It’s a miracle that Galvez was around to do that. In July of 2021, he attempted suicide as the weight of life grew too heavy to bear. But he is here now, physically and emotionally strong enough to carry his son through the next several months of healing.

    It will take several weeks for the donated marrow to start producing new cells, but so far everything has gone according to plan, said Galvez, who hasn’t left his son’s side since he finished the donation process last week.

    The two spend their days building LEGOs, playing Nintendo Switch and watching movies – Levi’s favorite is “Home Alone 3.”

    In addition, there’s schoolwork for Levi, physical and occupational therapy sessions and art therapy. On the days his mom isn’t able to be there, he FaceTimes her and his little sister, Violet.

    “The days go by pretty fast,” Galvez said.

    Levi lays in bed at Riley Children's Health

    Not all of the days have been filled with play, of course. Levi has felt “weak and crummy” some of the time, but Monday was a good day, dad said.

    “He had plenty of energy for physical, occupational and art therapy.”

    On Saturday afternoon, March 12, Levi’s kindergarten teacher is organizing Light It Up for Levi, encouraging law enforcement and other emergency responders to come by the hospital parking lot with their lights flashing, so Levi can see them from his hospital room.

    “It’s a great way to show support for a kid who’s just been through too much,” Galvez said.

    Also showing support are Academic Health Center police officers who work at IU Health Methodist Hospital, where Galvez works, and at Riley.

    Levi smiles next to officer Caleb Elliot

    Officers Caleb Elliott and Isaac Parris visited Levi earlier this year at Riley and presented him with a junior police officer badge.

    “He’s held onto that patch since he was discharged the last time,” Galvez said. “I think he really wants to be a police officer.”

    But first, he needs to enjoy being a kid, his dad said, something cancer has stolen from him.

    “I only wish I could be in his place and go through everything he’s going through. The nausea, fevers, headaches and the overall pain, it feels like it never ends. But if he’s strong enough, I have to stay strong for him.”

    Previous stories:

    He tried to take his own life. Now he is saving his son - Geovani Galvez lacked purpose and hope that July day when he shot himself. Seven months later, he is donating bone marrow to help his little boy beat leukemia.

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    https://www.rileychildrens.org/connections/cancer-couldnt-keep-her-out-of-the-pool Cancer couldn’t keep her out of the pool 2022-03-03T09:30:00-05:00 2022-04-11T14:21:56-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    When she was a kid in the hospital, Cora Walrond’s favorite physicians, nurses and therapists were the ones who made her feel seen and heard. People she could connect with on a human level.

    Is it any wonder, seven years later, that Cora is on a path to be one of those healthcare workers with a passion for people?

    Cora Walrond

    Cora, now 19, is a Division 1 swimmer at the University of Toledo, but the Fort Wayne, Indiana, native was in middle school when cancer threatened to derail her future in and out of the pool.

    It was the hives and the fatigue that first worried her parents, Eric and Galyn, but they thought it was an allergic reaction at first, or maybe she was just stressed and tired from too much time in the pool.

    As the months wore on though, doctors in Fort Wayne suspected something worse. Cora’s care was transferred to Riley Children’s Health in Indianapolis in December 2014. That’s when the 12-year-old was diagnosed with Stage 4 Hodgkin’s lymphoma.

    Hodgkin’s lymphoma is a relatively aggressive cancer that can quickly spread, but it is also one of the most easily treated types of cancer.

    Cora went through five rounds of chemo, each lasting 21 days. She responded remarkedly well to the treatments, finishing March 6, 2015, with no evidence of cancer detected.

    Cora Walrond

    Cora’s oncologist is no longer with Riley, but she continues to see nurse practitioner Ann Haddix for yearly checkups at Riley’s cancer survivors’ clinic.

    It was during her time at Riley for cancer treatment, followed later by surgery by Dr. Mark Ayers for supraventricular tachycardia (an abnormal heartbeat), that Cora took notice of those care team members who connected with her on a personal level.

    “I think this happened to me for a reason,” she said. “My goal is to help kids after chemo to get them back to where they were physically.”

    She is majoring in recreational therapy, with the goal of becoming an occupational therapist and working with the pediatric population.

    Cora Walrond

    Cora, a three-time All-American athlete, is driven to compete. She has been a swimmer since she was 6, eventually inspiring her four younger siblings to follow her into the pool.

    It has always been her safe space. Even during treatment, she went to the pool. On the days she was able, she swam.

    “Obviously, I had my bad days, and I couldn’t swim, but I still went to the pool and helped coach the little kids,” she said. “I would still get in and do what I could do. That was part of what got me through the treatment.”

    Cora Walrond

    While her doctors were amazed to see her level of activity at the pool continue despite low hemoglobin levels, she didn’t want to be home on the couch.

    “The pool was one place where I was allowed to be because the chlorine killed most of the germs. It was one safe spot I could be.”

    In 2016, Cora got to realize the dream of a lifetime. Make-A-Wish Foundation granted her wish to attend the Olympics in Rio de Janeiro, Brazil.

    Cora Walrond

    There, she got to see swimming idols Michael Phelps and Katie Ledecky compete.

    “Absolutely amazing” is how she describes it. “Probably one of the coolest things I’ll ever do.”

    She got to see Phelps, the most decorated Olympian of all time, swim his last races before retiring, and watch gymnast Simone Biles lead the 2016 U.S. women’s team to a gold medal and earn three additional gold medals in individual events.

    While she admires these famous athletes, she’s a sucker for the underdog in any event – like Lydia Jacoby, the high schooler from Alaska who won the gold medal in the 100-meter breaststroke last summer.

    “She was someone no one saw coming, which is so cool,” said Cora, a graduate of Homestead High School in Fort Wayne. “It makes it more real for me.”

    Competing in the Olympics may not be in her future, she said, “but I don’t put anything in the rearview mirror. If I can conquer what I did and get to where I am now, I don’t doubt myself.”

    And neither have her parents ever doubted her.

    Cora Walrond

    “They were clearly very supportive throughout my cancer journey, but also through my athletic journey,” she said. “They never forced me to keep going. They let me do what made me happy and supported me every step of the way.”

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    https://www.rileychildrens.org/connections/nine-year-old-battles-rare-nose-tumor Nine-year-old battles rare nose tumor 2022-02-28T17:59:00-05:00 2022-04-11T14:40:53-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    “Dad, there’s something in my nose.”

    If you have kids, you’ve probably heard talk like this before. But for Joe and Bekah Kessler, the night they found a huge growth in their little boy’s right nostril was the beginning of a frightening and life-threatening health journey that began nearly two years ago.

    That “something” that Dré Kessler felt in his nose wasn’t anything he could blow out. Doctors near the family’s Rossville, Indiana, home first thought it was a nasal polyp. Simple enough to remove, right?

    It would explain why Dré snored like a freight train, his dad said, and often had trouble breathing through his nose.

    What doctors did remove turned out to be rotting tissue – with a smell you can only imagine. He needed three units of blood after his nose began to bleed profusely during what was supposed to be a simple procedure.

    Dré Kessler

    It was not a polyp, but rather a tumor that was growing behind his nose, the boy’s parents were told.

    That’s when an ear, nose and throat doctor (otolaryngologist) advised the Kesslers to get straight to Riley Children’s Health, where Dré was diagnosed with a very rare disease called juvenile nasopharyngeal angiofibroma – JNA for short.

    RARE AND AGGRESSIVE

    The tumor is benign, though the condition is anything but, according to Riley specialist Dr. Mesha Martinez, director of Pediatric Neurointerventional Radiology.

    In Dré’s case, the tumor is not only rare, but tenacious, Dr. Martinez said. It has been resected twice by Riley ENT specialists Dr. Bruce Matt and Dr. Elisa Illing, yet continues to grow.

    “We probably see at Riley three to four patients a year with this,” she said, which is a lot considering there are just a few dozen cases diagnosed annually in the country.

    Her role in the surgery happens the day before, when she performs a preoperative embolization – cutting off blood supply to the tumor before it is resected.

    “It gets trickier every time you have to go in and operate,” Dr. Martinez said. “The tumor parasitizes the blood supply near it. The tumor really likes blood, and it grows rapidly by recruiting other vessels in the area to it.”

    Dré Kessler

    It could eventually recruit blood supply from the brain, which makes it impossible to navigate, leaving radiation as the only option.

    “It’s unfortunate that Dré continues to have a more aggressive type of this,” she said. “It is considered benign, but it can be more complex if it keeps recurring, then it can grow into the brain area. That’s one of the concerns the surgeons have been having. This third procedure will be more complicated, more difficult to treat.”

    “I JUST KNEW GOD WAS WITH ME”

    Dré, 9, is the oldest of Joe and Bekah’s four sons. He came to Riley recently, along with his parents and baby brother, because he wanted to talk about his condition – which we are highlighting on Rare Disease Day – to spread awareness not only of JNA but of the importance of faith over fear.

    Dré Kessler

    “I just knew God was with me, and he would help me through this,” says the fourth-grader when asked how he has coped with something that affects his breathing, talking, eating and just being a kid.

    “We tell him God created him unique,” said Bekah, who home-schools her three oldest sons. “His name means warrior, so he is a fighter. He is tough. And if we can help somebody else and bring awareness through this, we’re willing to walk that journey with him, as hard as it is.”

    At times, Dré seems wise beyond his years, explaining JNA’s impact on his life. Then he reverts to his 9-year-old self, talking about the icky, gross stuff stuck in his nose, and he proceeds to blow his nose for good measure. It hardly does the trick.

    Joe can’t help but remember how frightening it was when his son first complained about how big the growth in his nose had become while on a family vacation.

    “Before we got home, it burst and he had a hemorrhagic nosebleed. It took 45 minutes to get it stopped. This thing was literally rotting inside his sinuses. It was so big it cannibalized itself when it outgrew its blood source,” said Joe, a volunteer firefighter/EMT.

    “It went from the bottom of his ear canal, clear up through his sinuses and burst through the septum and was growing down his nasal passages.”

    LEARNING TO BE BRAVE

    JNA, which occurs in juvenile males only and is believed to be hormone-induced, often corrects itself once a patient reaches adulthood. But that doesn’t help the Kesslers as they look at the next seven to eight years and wonder what this disease will do to their child.

    He has already had two surgeries and is looking at another one as soon as this summer.

    Dré Kessler

    The Kesslers are grateful for their son’s care team, saying Riley is “blessed beyond measure” to have physicians like Dr. Martinez and others here.

    She repays the compliment, recalling how impressed she was with the family when meeting them for the first time.

    “Dré was very optimistic, and I enjoyed his positivity. Most adults wouldn’t have the ability to be so brave.”

    As one of only 40 to 50 pediatric neurointerventional radiologists in the world, Dr. Martinez said establishing the program at Riley has not been without challenges, but she has relied on her own faith to guide her.

    “Sometimes you question, is this truly my purpose? But then families like Dré’s come along. Their interactions with me have always been positive, and it lets me know that God is real and that he will give you peace and encouragement in times of storm,” she said.

    BATTER UP

    The Kesslers have learned to navigate their new world, but they live with constant anxiety.

    “We get scared sometimes, we get sad sometimes,” Joe said. “We don’t know how to help him sometimes.”

    And they get angry sometimes, wondering why this is happening to their boy, while at the same time expressing gratitude that Dré gets to go home with them, unlike so many other sick children at Riley.

    In the early days, they worried constantly about him hitting his face while roughhousing with his brothers or falling while riding his four-wheeler.

    Now, they are considering letting him play baseball this spring, something they couldn’t have imagined a year ago.

    Are they worried? “A little bit, but I want him to live his life,” Bekah said. “Mom and Dad can’t always hold him back. He’s a boy, he’s active. If he plays baseball and it’s too much, then we’ll know, but we’re going to let him try it.”

    “At a point, you just have to let go,” her husband agreed. “You can’t hover all the time.”

    The couple wishes there was more research available about the disease and more support for families going through it, but they are willing to be that support for other patients and parents.

    “We take a lot of things for granted and health is one of them,” said Joe, who acknowledges feeling helpless in the realization that there is so much he doesn’t know. Nor does anyone around him understand it.

    “We might not have the answers, but we are going to stick together through the hard times,” Bekah said. “We’re doing to do this together. We’re going to fight for Dré.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/he-tried-to-take-his-own-life-now-he-is-saving-his-son He tried to take his own life. Now he is saving his son 2022-02-27T17:02:00-05:00 2022-04-19T16:50:34-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    From the moment he pulled the trigger, Geovani Galvez regretted it.

    He can’t tell you when he began thinking that suicide was the way out, but he can tell you about the moment he tried to take his life.

    Almost matter-of-factly, he lays it out.

    It was a Monday, about 6 a.m.

    Galvez had just gotten off work at IU Health Methodist Hospital, where he worked the night shift, July 19, 2021. He’s not really sure what was going through his head, other than that he felt alone, hopeless and without purpose.

    He drove home, found a gun that belonged to another family member, returned to his car and pointed it at his chest.

    “I shot myself,” he said quietly. “I didn’t want to be here anymore. There were so many things working against me. I thought that was the end. I felt the pain and then I was like, ‘I can’t die.’”

    Lucky for him and his family, he didn’t.

    FROM NEAR DEATH TO NEW LIFE

    Today, Galvez is still getting his head around that reality, made all the more incredible by the fact that after trying to take a life – his own – he is saving a life – his son’s.

    In the months since his suicide attempt, the 29-year-old father has recovered physically and emotionally to the point where he is able to be a bone marrow donor for his 6-year-old son, Levi, who has acute lymphoblastic leukemia.

    Geovani Galvez and his son Levi smile for a photo

    Father and son will undergo the procedure this week at Riley Hospital for Children, with Dr. Sandeep Batra as lead physician.

    Galvez is a haploid, or half-match, donor for Levi, who has been battling leukemia since 2018.

    “In August 2020, Levi finished treatment. We didn’t ring the bell because of COVID, but we were happy,” Galvez said. “Last March, he relapsed again. They found cancer in his central nervous system, but they were able to get him in remission again.”

    After yet another relapse, it was decided that a bone marrow transplant would be his best chance for beating the blood cancer.

    Galvez can’t help but think he survived so he could save his son. It’s a powerful motivator to look at life differently.

    He remembers being in the emergency department at Methodist, where the trauma team, led by Dr. Jennifer Hartwell, rallied to save him.

    “I received amazing care at Methodist. Dr. Hartwell is an amazing physician, and her team was really awesome.”

    The bullet damaged his spleen and diaphragm and fractured several ribs. It is still lodged behind his rib cage.

    Life started over for him that day.

    “It was like the day I was born again. I shouldn’t be here right now, but I am. Everybody worked so hard and took the best care of me and kept me alive.”

    PAIN BEHIND THE SMILE

    Galvez recognized some of the people around him in the ED because he works there as a patient financial counselor.

    Levi smiles for a photo

    One of those people was chaplain Thomas McDorr, who would become a key figure in Galvez’ recovery.

    “I remember waking up in the ICU and Thomas was there and my mom was there,” Galvez said. “He was by my side from that day, and I think it was meant to be.”

    As a healthcare worker, Galvez said he is used to taking care of others, but the pressures of life, combined with COVID, got the better of him that day.

    “People see you smile, and they think everything’s perfect in your life, but nobody knows what’s going on deep inside you.”

    It’s McDorr’s mission to see beyond the smiles, to acknowledge the pain people are suffering – not just physically, but emotionally. As trauma chaplain, he does the same for every patient, but he admits it was a little shocking to see not only someone he knew, but someone he works with in the ED.

    “I remember there being a lot of concern from a lot of people down in the emergency room when he came in as a trauma patient,” McDorr said of Galvez.

    Levi lays in bed at Riley Children's Health

    “Every trauma patient has a unique experience and story. I come alongside people in those difficult times to hear their story, to validate their experience and their feelings,” he said. “To let them know that they’re being heard and they have someone they can trust and someone who is going to support them during their time in the hospital.”

    McDorr emphasizes that an injury, or the story behind it, does not define a patient. He does his best to set aside any bias or judgment before he enters a trauma bay or patient room.

    “It’s easy to jump to conclusions, but you have to be able to go in and have a conversation and see that this person is hurting, not just from their injury, but from their emotional pain,” he said.

    “That’s why what we as chaplains do is so important. A lot of what we do in the hospital is focused on the physical injury, but all of those injuries come with their own emotional and sometimes spiritual trauma.”

    “THERE WAS A REASON I STAYED ALIVE”

    McDorr followed Galvez throughout his 11-day stay at Methodist, learning about his young son and the struggle the family faced with cancer.

    The chaplain has three sons, one of whom is the same age as Levi, so the two men forged a natural connection that continues today, as Galvez and Levi’s mom, Ebby, wait by their son’s side for the transplant that will give him another chance at life.

    “That day I didn’t want to live because I didn’t know what the purpose of my life was. But there was a reason I stayed alive.”

    That reason sits beside him, munching on potato chips and watching videos on his dad’s phone.

    Levi and Galvez embrace

    “He doesn’t really know what’s going on,” Galvez says of his son, who had just finished a radiation treatment. “I tell him we’re going to the hospital, and he says, ‘OK, which one,’ and he tells me where to park and what elevators to go on. It’s become a normal routine to him, which is sad. No kid should have to get used to that.”

    Levi, who loves LEGOs, his little sister and anything to do with food, will receive his father’s donated bone marrow March 2 and is expected to remain hospitalized at Riley for six to eight weeks.

    “I just want to get it done with,” Galvez said. “I’m not worried about myself; I’m worried about him. He’s the most important thing. Whatever I have to do is what I have to do.”

    As he focuses on helping his son, Galvez also finds purpose in sharing his story to let others know that hope is out there, even in their darkest hour.

    RECLAIMING HIS LIFE

    “Asking for help is one of the hardest things to do. I know,” he said. “But I want people to know they aren’t going to be judged. You don’t have to suffer alone. There are people who really care out there, so giving up shouldn’t be an option.”

    For McDorr, seeing a man’s brokenness reshaped into a lifegiving force is a remarkable testament to the power of love.

    “Traumatic injury doesn’t always serve a purpose, but if someone is able to make meaning of their situation, I think it helps with their recovery,” the chaplain said.

    Looking back, Galvez knows why he survived. He lived so he could give life to his son.

    That alone is so powerful, McDorr said. But the suicide survivor will build on that purpose in the months to come by volunteering with Methodist Hospital’s Trauma Survivors Network, which McDorr leads.

    “I’m glad he was able to have that moment of realizing the greater purpose and meaning his life has.”

    Galvez continues to receive counseling through Aspire Indiana.

    If you are thinking about hurting yourself or you know someone who needs help, please call the Suicide Prevention Lifeline at 800-273-8255.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/after-the-flames-athlete-digs-deep-to-get-back-on-the-court After the flames, athlete digs deep to get back on the court 2022-02-23T11:03:00-05:00 2022-09-02T09:43:26-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Brie Miller is made of strong stuff. A fierce competitor on the basketball and volleyball court, she’s not one to let an injury get her down.

    So when her mom picked up the phone to hear her teenage daughter screaming and crying in pain one day, she knew something was desperately wrong.

    “All I knew was she was hurt,” Erin Miller said. “It took 10 minutes for her to get out that she was burned.”

    Brie’s mom was 25 miles away at her home near Greencastle, Indiana, about to head to work. Her daughter was at her dad’s house on that July day last year. Her father was gone, and Brie was making mozzarella sticks in hot oil on the stove when her mom says she turned the heat up too high, and the pan caught fire.

    She panicked, afraid a shelf above the stove would also burst into flames, so she grabbed an oven mitt, opened the sliding glass door off the kitchen and tried to dump the burning oil outside.

    It splashed back onto her arm, she dropped the pan, and hot oil ran down her leg from her knee to her toes.

    The oven mitt saved her right hand from burns that day, but she suffered severe burns on her right arm, leg and foot.

    Erin Miller got to her daughter before the ambulance did, and together with a friend who is a nurse, took her to a nearby Hendricks County hospital where she received emergency treatment before being transferred to Riley Hospital for Children.

    SPRAY-ON SKIN

    Dr. Brett Hartman, medical director of the Riley Burn Unit, said burns like Brie’s are all too common. The best thing to do in the event of a fire on the stovetop is to cut off the oxygen to the fire – put a lid over the pan and turn off the heat.

    In treating the teen, he was able to remove a small flap of healthy skin the size of a credit card from her inner thigh to create “spray-on skin.” Cells from the healthy skin are dissolved with an enzyme, creating a solution that can be sprayed over the burned area, regenerating the skin.

    Brie Miller's burned leg and foot

    “He was able to cover her whole foot, leg and arm with that,” Erin Miller said. “She only had to have one surgery, so it was the best possible outcome. The whole team was so amazing.”

    Brie’s state of mind early in her treatment was not the best, she freely admits.

    While the pain was “unimaginable,” the hardest part of the experience, she said, was getting in the right mindset to face the challenge ahead.

    Brie's recovering arm

    She had goals. She was going into her senior year at South Putnam High School, and she wanted to compete in the sports she loves.

    When doctors told her she might miss the opening of volleyball season, “she’s like, this is not acceptable to me,” her mom recalls. “What do I need to do,” she asked her care team.

    Work hard, they answered. And she did.

    “They helped me tremendously. I wouldn’t have played my first volleyball game if it wasn’t for all the nurses and therapists who helped me along the way,” Brie said.

    “They pushed me when I didn’t even want to walk somedays. They made me do it and get through it. I wouldn’t be where I am today without them.”

    NO PAIN, NO GAIN

    As a nurse in the burn unit, Angela Seitz sees a lot of patients, but Brie was different – an outstanding patient and person, she said.

    Brie shoots a basketball

    “She was always wearing a smile. She was a patient whose motivation was remarkable. She had goals and she was going to get them accomplished, no matter what,” Seitz said.

    “Brie had an awesome attitude and was willing to do what she needed to get better. Obviously, you can see that same remarkable attitude with her sports. No pain, no gain.”

    A month after the accident, Brie was back on the sidelines with her volleyball team. She made her 1,000th kill on the court Sept. 16th – a triumph she had dreamed about since she was a freshman.

    Brie holding a

    And just last month, she achieved another goal, scoring her 1,000th point on the basketball court Jan. 22.

    “She’s a strong girl,” her mom said. “There’s no way I could have done what she did.”

    That includes the debridement treatments to remove dead tissue that burn survivors must endure. Brie told her mom that it would be best if she wasn’t in the room to see those.

    “The gruesome part of it doesn’t bother me,” Miller said. “But seeing someone so strong and strong-willed – to see her have to go through that much pain …”

    Well, it’s hard on a mama’s heart, that’s for sure. But seeing how the burn team rallied around Brie and cheered her on was amazing, she said, adding that she hopes she and her daughter can reunite with the team to show their appreciation at some point.

    A LESSON IN KINDNESS

    Today, Brie says she has no pain. If you ask her mom, she wonders.

    “She still has itching and tightness on the top of her foot, but I don’t know if she’d let me know if she was in pain,” Miller said. “When you go through something that painful, does anything hurt you anymore?”

    What can hurt are the emotional scars, the sideways glances and comments from other people, Brie acknowledges, but she refuses to let that get her down.

    “They don’t know what you went through, and you don’t know what anyone else is going through, so don’t judge,” the 18-year-old advises. “People still today make fun of me, but they don’t know my story.”

    Her advice is a good lesson for all of us: “Be kind to other people. You just never know what they’re going through.”

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    https://www.rileychildrens.org/connections/iu-health-team-makes-special-deliveries-in-midst-of-storm IU Health team makes special deliveries in midst of storm 2022-02-21T15:34:00-05:00 2022-04-11T10:22:55-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Just like the U.S. Postal Service, “neither rain nor sleet nor dark of night” can keep the IU Health Enteral Nutrition team from their appointed rounds.

    When a winter storm dumped nearly a foot of snow on some areas of Indiana earlier this month, this team sprang into action to ensure families had what they needed.

    This despite a crippling collapse of the infrastructure designed to deliver the nutritional supplies to families all over the state due to unsafe road conditions.

    The team supports 5,100 patients (80% pediatric) statewide, many of whom require nutrition via feeding tubes.

    As Gail Shepard, statewide director for Enteral Nutrition, part of the IU Health Home Care team, tells it, a crisis like this brings out the best in her team.

    “The thing I’m most proud of is, I feel like it’s innate in their character that when there’s some kind of crisis or trial, they just jump in headfirst,” Shepard said. “It’s always about focusing on the patient and what the patient needs.”

    That’s what Jane Nitsch was focused on when she found out there was a family in Carmel who was out of the formula their child depended on to survive. UPS typically delivers a 28-day supply to IU Health Home Care patients around the state, but the shipping company – like trucking companies elsewhere – was grounded during the Feb. 3 storm.

    Professional headshot of Jane Nitsch

    Nitsch, clinical dietitian physician liaison, reached out to a manufacturer’s rep to secure samples of a specialized formula the child needed, arranging to meet the representative at the intersection of two highways between Fishers (where she lives) and Carmel (where the family lives).

    Nitsch then drove the samples to the family’s home to get them through the weekend until a full delivery could be made.

    Even if parents could get to the grocery, they won’t find some of the specialized formulas on the shelf, Nitsch explained.

    “If they are on these specialty formulas, this might be the only thing they can tolerate due to medical conditions,” she said. “They can’t just go to the store and buy something else.”

    The mother was understandably relieved, as were other parents who received special deliveries during the storm.

    “Going into the weekend and not having anything for your child is scary,” Nitsch said.

    The team has a network of couriers who can deliver in emergencies, but drivers were few and far between amid the storm.

    “We had only a few couriers running the whole state, and they were so behind that it could be 11 at night before they could get there and maybe a child hasn’t eaten all day,” she said.

    Nitsch, whose primary role is to travel the state and market the enteral nutrition department’s services, said this was a time to take off her marketing hat and help however she could.

    “These patients have to eat, and they depend on us. We were trying to figure out every possible scenario and ways to help,” she said. “I was able to help one patient while the rest of the team could figure out other needs.”

    That includes Lauren Jones, clinical dietitian team lead, who used her personal credit card to pay for formula for two patients and arranged for them to pick them up at local retail stores.

    Ken Stiles, inventory control specialist for the Home Care Distribution team, made a personal delivery on his way home from work in the midst of the storm. Tim Kelly and Brandon Fancher helped out as well, making stops in Bloomington, Kokomo and Valparaiso.

    As Nitsch said, “Everyone pitched in.”

    The same can be said today as the team sorts through a formula recall from Abbott Laboratories.

    “We have to triage, we have to figure out who got the affected product and what substitutes are available,” Shepard said.

    Again, it’s an all-hands-on-deck mentality – something her team is really good at.

    “It doesn’t matter what the crisis is. This is just a natural part of their being, which is amazing.”

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    https://www.rileychildrens.org/connections/a-teenagers-desperate-plea-please-dont-give-up A teenager’s desperate plea: “Please don’t give up” 2022-02-17T15:23:00-05:00 2022-03-28T11:43:21-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Addyson Czarnecki’s favorite place in the world is in the water. Swimming pool, open water – doesn’t matter – she loves to swim. You could even say she lives to swim.

    So when her heart started racing last year during practice and swim meets at Carmel High School, the freshman transplant from Georgia tried to brush it off at first. She was an athlete; her heart was doing its thing.

    Until it began to slow her times and steal her joy.

    “I was starting to fall out of love with swimming,” Addy said. “It got to the point where I was dreading going to practice every day because I knew I was going to feel the episodes, and they did not feel good.”

    The episodes she refers to have a name – SVT or supraventricular tachycardia – the sudden onset of an abnormally fast or erratic heartbeat.

    While it’s not common, according to Dr. Mark Ayers, pediatric cardiologist at Riley Hospital for Children, it’s more common than people think. About one in every 750 children has it, he said.

    “The good thing is that it’s not typically life-threatening, but it does cause the heart to pump less efficiently while it’s beating so fast, and it can be really distressing for the patients,” Dr. Ayers said.

    Symptoms can include dizziness, weakness, shortness of breath and chest pain. Most episodes last a few minutes, but they can be prolonged to the point that medication must be given to basically reset the heart’s rhythm.

    LISTEN TO PATIENTS

    Addy began feeling some of these symptoms earlier last year – fatigue, chest pain and a decline in endurance while swimming. It began to nibble away at the top-ranked swimmer’s times in the pool.

    Abby preparing for a Carmel swim meet

    At first, her parents thought it was related to the chlorine-induced asthma she has been treated for by Riley pulmonologist Dr. Nadia Krupp. But a visit to Dr. Krupp last fall ruled that out, said Addy’s mom, Amy.

    “Dr. Krupp said her asthma is well-controlled, but she did not like the episodes of arrythmia and immediately referred us to cardiology, where we saw Dana Hartman,” Amy Czarnecki said.

    Hartman, a pediatric nurse practitioner with the cardiology group at Riley, vowed to get to the bottom of Addy’s problem, sensing how desperate she was to get back in the pool.

    “When I saw her in clinic, she had been having these fast heartbeats when she was swimming and it made her feel awful,” Hartman said. “Swimming is her favorite thing in the entire world.”

    It would have been easy perhaps to dismiss Addy’s symptoms at first, blaming them on the anxiety and stress that comes with being a high-achieving teenage athlete. That can happen all too often for female patients in general, Hartman said, when providers don’t take the time to really listen to their patient.

    A DIFFERENT KID

    “Obviously, this was really bothering her, keeping her from doing what she loves, which is always my gauge for how aggressive to treat it,” Hartman said.

    SVT is not fatal, but rather more frustrating for those who have it, and it can have a negative effect on quality of life, she added. She often sees kids referred to cardiology for dizziness or a fast heartbeat – and they are checked out to make sure they are OK – but it’s not stressing them out or keeping them from doing the things they want to do, she said.

    “But for Addy, this was just devastating. Mom said it’s like she was a different kid – depressed, anxious and stressed,” Hartman said.

    The nurse practitioner suspected it might be SVT but wanted to prove it by catching it when it happened in the pool. They tried to do that with help from a water-resistant monitor that Addy wore while swimming, but the monitor kept shorting out.

    They tried to re-create it on the treadmill, and Addy felt a little crummy, but it wasn’t the same. For Addy, time was of the essence. She was desperate to salvage what remained of her swim season with the top-ranked Carmel girls swim team.

    Meanwhile, Addy’s mom was relieved to see that the Riley team was truly listening to her daughter.

    “Dana heard Addy’s concerns and said we are going to figure this out. We respected that,” Czarnecki said. “She saw that my daughter lives to swim, and this was affecting the thing she loved most in life.”

    “WHAT IF THEY CAN’T FIX IT”

    Hartman conferred with Dr. Ayers and the family, and they agreed that it was in Addy’s best interests to do something sooner rather than later.

    “Here is this thing you love – swimming – and it’s causing you pain,” Hartman said. “She was grieving that.”

    On Dec. 23, Addy remembers walking back to the cath lab, where Dr. Ayers was going to find and hopefully eliminate the wayward electrical pathways in her heart that were causing her discomfort.

    “I was just so scared walking back to the procedure,” the teen said. “What if they can’t even find it or they can’t fix it.”

    She asked Dr. Ayers, “Please don’t give up.”

    Addy didn’t walk back to the procedure at Riley alone, her mom said.

    “She was walking into the SVT lab and crying. But all the nurses, it’s almost like they cheer you on as you’re walking down the hallway,” Czarnecki said. “We are so enamored with everyone from start to finish at Riley. They exceeded every expectation we could ever have.”

    And the first thing Addy asked when she woke up after the hours-long procedure: “Did he fix it?”

    He did indeed.

    Abby gives a thumbs up at Riley Children's Health

    Dr. Ayers explained how he and his team put IVs into Addy’s leg veins that lead directly to the heart, allowing him to pass catheters – thin plastic tubes – into the heart to measure the electricity as it flowed through the heart.

    “We figure out where the pathway is, then we ablate it – cauterize that small area that shouldn’t be there,” he said. “We have some advanced technology that lets us do 3D anatomic mapping of the heart and we use that to create a map of her heart, reducing radiation exposure.”

    Most kids Addy’s age have one of two types of SVT, Dr. Ayers said. She had both, so he got rid of both.

    None of it could have happened without his team, he said.

    “We have amazing cath lab nurses and anesthesiologists who help us during these procedures. It is a big group effort.”

    “HE DIDN’T GIVE UP”

    “Dr. Ayers was amazing,” Czarnecki said. “He didn’t give up; he kept testing until he got both pathways ablated, burning the lining of her heart to stop that conduction.”

    Abby with Dr. Mark Ayers

    What he was able to do was the “perfect scenario,” Hartman said, “because it fixes the problem and now she’s back to swimming and winning.”

    Addy was back in the pool practicing a week after the Dec. 23 procedure, which her mom joked was both a Christmas and birthday present. Addy turned 15 on Dec. 28.

    Three weeks after her procedure, she competed in her first swim meet and got close to her personal record. And last weekend, she was able to cheer on her older Carmel High School teammates as they clinched yet another state title – the school’s 36th consecutive title for girls swimming.

    Addy’s prognosis is good, said Dr. Ayers, noting that the SVT procedure is generally considered a cure and it avoids the risks of long-term medication.

    “We have a 98 to 99 percent acute success rate getting rid of these SVTs for kids. It’s really nice to be able to do that for them, and ultimately it should just be a blip in their life story.”

    DOCTOR WAS A PATIENT

    He knows a thing or two about being a heart patient as a kid. He had three heart surgeries performed by the esteemed Dr. John Brown at Riley after bacterial endocarditis destroyed his aortic valve.

    At first, he felt sorry for himself, he admitted. Then the experience helped clarify his life’s purpose.

    “I decided I wanted to be a cardiologist and treat kids and do what Dr. Brown had done for me,” he said in an earlier interview.

    Addy and her mom are extraordinarily glad for that.

    “We were right where we needed to be at the right time,” Czarnecki said.

    Addy agrees.

    “It means so much because I finally love swimming again.”

    Riley Hospital is ranked No. 5 in the nation for pediatric cardiology and heart surgeries by U.S. News & World Report.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/their-hearts-are-full-this-valentines-day Their hearts are full this Valentine’s Day 2022-02-14T10:19:00-05:00 2022-03-25T12:11:51-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    This is a love story. Love in its many forms. The love between a bride and her groom, a father and his daughter, and a family and Riley Hospital.

    Audra Parrett is the bride and the daughter in this story. Chad Parrett is her new husband, and Eric Lane is her dad.

    Valentine’s Day seems the perfect time to share this story, but it goes back several years – 2008 to be exact.

    In August of that year, then-13-year-old Audra Lane got it in her head to climb onto one of her family’s big four-wheelers in rural Washington, Indiana, and speed down a country road.

    She careened off the road into a ditch about three-quarters of a mile from her home, passing out on impact.

    Dazed, she came to and tried to get up, using her right arm to brace herself. That’s when she realized it might be broken. Still, she stood and tried to walk home, but soon collapsed on the side of the road due to excruciating pain in her back.

    “I thought I was going to die.”

    Yet, she had no obvious external injuries when a local doctor came across her on the road and gave her a ride home. He gave her parents strict instructions to get her to the local hospital promptly if she exhibited any signs of trouble.

    Not even five minutes later, she said, she began having trouble breathing and was rushed to the local hospital in Daviess County.

    Audra asleep in the hospital

    Audra, a competitive athlete, was later airlifted to Riley Hospital for Children, where she spent eight days recovering from a shattered spleen, a punctured lung, bruised kidney, broken wrist and broken rib.

    It was there that she met amazing caregivers, including trauma surgeon Dr. Alan Ladd, and her career began to come into focus.

    Today, the once-aspiring veterinarian is a first-year resident at West Virginia University School of Medicine. She graduated from Franklin College, where she played collegiate soccer, and completed medical school at the West Virginia School of Osteopathic Medicine. Her goal is to be an anesthesiologist.

    Audra holding her college diploma with her family

    “Being in the hospital and having so many nurses and doctors interested in my care and making me feel comfortable in a time that was really scary to a 13-year-old girl, I thought maybe instead of animal medicine, I want to do people medicine so I can be that comforting person for someone else,” she said.

    It was during her time in the hospital that Audra also began to appreciate the full measure of her father’s love for her.

    As she recuperated, she remembers her dad by her side resting his hand on her heart. The sensation comforted her and relieved some of the pressure and pain from a chest tube. The “referred pain” she suffered traveled from her shattered spleen up into her collar bone and shoulder.

    “I absolutely remember him placing his hand there, and I would wake up immediately if he took it off,” she said.

    Being able to do such a simple thing for his daughter was a great comfort to Eric as well.

    “The weight of my hand was enough to move the chest tube to not press against her collar bone,” he said. “What a gift just to be able to do that to ease her pain.”

    That experience stayed with Eric, so when it came time to give a speech at his little girl’s wedding last year, he spoke straight from his heart.

    As the room quieted, the father of the bride took the microphone and surprised Audra with his touching toast, referencing the time she spent at Riley Hospital and the initial pain of the chest tube.

    “What we found out is If old dad would just sit there and put his hand on her heart, it relieved enough pressure that she could be comfortable and could rest,” he told the wedding guests.

    “So, I spent a number of hours just sitting there with my hand on her heart, taking the pressure off and allowing the chest tube to not press up against the collarbone. Chad, it’s your turn,” he told her groom. “You get to put your hand on her heart.”

    The sweetness of that moment was captured on video, which went viral. Audra was overcome.

    The first time she cried after the accident, her dad said, was when doctors told her she would miss soccer season that school year. She took on a new role with her soccer team as a support person/trainer, helping players on the sidelines.

    About three months later, she was competing again in basketball and track.

    “I was recklessly playing and diving around and giving my parents heart attacks as if I didn’t almost die in a four-wheeler accident.”

    She played through a lot of pain, her dad said, her competitive nature refusing to let her sit out a practice.

    “Audra’s passion for life after the accident just blossomed,” he said. “She said she got a second chance and she was going to make the most of it.”

    Audra with her family during the holidays

    Audra is the middle of Eric and Linda Lane’s three children. She grew up making homemade Valentine’s cards for her parents, but she didn’t stop when she got older. She just got more creative.

    In Eric’s office hangs a special gift she made with a Bible verse written on it that he treasures. He can’t remember for sure, but he thinks it was a combined Valentine’s/birthday gift (his birthday is Feb. 13).

    The Lane family has immense love and respect for Riley. In fact, Audra’s younger sister served on the Riley Dance Marathon board at Indiana State University and together, the family raised thousands of dollars for Riley by making and selling Christmas cookies each year.

    Audra and Chad embracing

    Eventually, Audra and Chad, who met playing soccer at Franklin College, would like to move back to Indiana to continue their careers. Chad worked as a respiratory therapist in pre- and post-transplant pulmonary at IU Health Methodist Hospital before leaving to join Audra in West Virginia.

    That would be sweet indeed to have his daughter and son-in-law closer to home, said Eric, a bank president. But he knows she is following her passion.

    “She’s who I hope to be when I grow up.”

    Wedding video courtesy of Sea Jay Films

    https://youtu.be/PQg1GFu7nOE

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    https://www.rileychildrens.org/connections/the-day-everything-changed-for-one-little-heart-transplant-patient The day everything changed for one heart transplant patient 2022-02-10T14:05:00-05:00 2022-02-10T14:54:34-05:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    The long days and nights are seared into Katie Kinnaird’s memory.

    Eleven months, one week and six days.

    Every holiday, every family birthday, every special event was celebrated within the confines of four hospital walls for nearly a full year.

    That’s how long her little boy was at Riley Hospital for Children, first waiting for, then receiving, a new heart.

    Caleb Kinnaird’s heart journey began well before that – actually the day he was born with tricuspid atresia in 2011. His parents, Katie and Daniel, learned at Caleb’s 20-week ultrasound that their son would be born with half of a functioning heart.

    Doctors at another Indianapolis hospital managed his condition with surgery and medication for the first year of his life, but he was ultimately transferred to Riley when it was determined he would need a heart transplant.

    The decline in his health happened literally almost overnight.

    “WE’RE SENDING YOU TO RILEY”

    On Halloween night 2012, little Caleb, dressed as a lion, was trick-or-treating, his grandmother, Cindy Cox, remembers. She recalls thinking then that his skin looked gray.

    The next day, they called the doctor and brought Caleb to the hospital for a heart catheterization. He suffered cardiac arrest before they could even start the procedure, but doctors were able to revive him within a few minutes.

    “That day, everything changed,” Cox said. “We had been on a path for three surgeries (Caleb had already had two), and they said then that he would need a new heart.”

    “We’re sending you to Riley,” the New Castle family was told.

    They arrived on the night of Nov. 1, 2012, and would remain until Oct. 13, 2013. Caleb, who was under the care of longtime Riley cardiologist Dr. Randy Caldwell (now retired), received his donor heart Sept. 25, 2013. Heart surgeons Dr. Mark Turrentine and Dr. Mark Rodefeld teamed up on the procedure.

    Debbie Murphy served as transplant coordinator.

    “She walked with us from the day we arrived at Riley to today,” Kinnaird said of Murphy. “She has been a constant thread in Caleb’s care.”

    11-YEAR-OLD COMEDIAN

    Eight-plus years later, Caleb is an active 11-year-old who loves making people laugh, his mom said. He recently sailed through his annual heart cath test, and it seemed appropriate to check in with the family this week for Congenital Heart Disease Awareness Week.

    “We’ve had a great track record since he got his new heart,” Kinnaird said. “He is full of energy, full of life. He loves swimming, but his greatest passion is acting.”

    The fifth-grader, a rough-and-tumble kid and a straight A student, recently landed the role of the wizard in his school’s spring production of “The Wizard of Oz.”

    “He’s our little performer,” Kinnaird said. “He’s a hilarious kid.”

    A year in the hospital can test a family, but the Kinnairds passed that test as well. It wasn’t luck; it was intentional.

    “One thing that deeply transformed our family that year was learning how to have fun and be joyful and thankful no matter what,” Kinnaird said. “We spent every holiday and birthday in the hospital, and we had to learn how to make life work in a 15-by-15 hospital room.”

    They refused to waste time being sad and moping around, she said, instead choosing to live life and be normal parents. That meant not feeling sorry for themselves and teaching Caleb not to feel sorry for himself.

    “We chose to find joy and thankfulness. That was written into us as a family from that point on. That’s still the way we live,” said Kinnaird, a youth minister, writer and staunch advocate for organ donation.

    During their year in the hospital, she wrote regularly in a blog, not really anticipating that many people other than friends and family would read it.

    “PEOPLE HELD US UP”

    “It started as a way to communicate efficiently, and it turned into this thing that thousands of people read,” she said. “It felt like the whole community was going through it with us. People were really connected to our story and to Caleb.”

    Friends and strangers alike rallied around the family, preparing meals, mowing grass, helping with pets and donating gas cards.

    “People pitched in and literally held us up, and God brought us through,” Cox said.

    Because of a strong social media following, Kinnaird has felt a responsibility to speak up about organ donation and to talk about Riley, which is near and dear to her heart.

    “I wish everyone knew just how fantastic a hospital Riley is. Most kids who have to wait so long for a heart don’t live. Our team was able to keep him stable for a very long time. The cardiologists and nurses are so fantastic that he never got an infection,” Kinnaird said.

    “We think Riley has out-of-this-world care. They didn’t just care for Caleb, they cared for our whole family, and we just feel incredibly indebted to them for how much a part of our life they have been.”

    As with any heart transplant patient, the future is uncertain. Caleb likely will need another heart in a few years, his mom said, but they refuse to allow that inevitability to steal their joy today.

    No matter what happens, they are going to face it with that same joy in their hearts.

    “There is always something to be thankful for,” Kinnaird said. “We have chosen to focus on that rather than on the things on our journey that are scary and unknown. That has helped keep our heads above water even in the most traumatic times.”

    Learn more about organ donation at indianadonornetwork.org.

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    https://www.rileychildrens.org/connections/when-was-the-last-time-i-sat-and-held-a-patients-hand “When was the last time I sat and held a patient’s hand?” 2022-02-08T17:04:00-05:00 2022-03-07T14:53:20-05:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Seven years ago, Harleigh Perry was a scared 15-year-old going into surgery at Riley Hospital for Children. She had her mom and her dad by her side, but she also had special nurses who helped her heal.

    Today, Perry is back at Riley, but on the other side of the bed. She is gaining clinical hours as part of her last semester in nursing school at Indiana State University.

    The Anderson native is being precepted by RN Tiffany Smith, who just so happens to have been one of Perry’s nurses back in 2015.

    It couldn’t have worked out better for both of them.

    “I always knew I wanted to go into healthcare because my great-grandpa was a physician and he was a great influence in my life,” Perry said.

    But she didn’t know if she wanted to be a physician, a nurse or a physical therapist.

    Until she met Smith.

    And this is when she begins to cry, as memories from seven years ago come rushing back.

    “Having Tiffany as my nurse – she was just so passionate, so attentive. You’re at your lowest point – oh my goodness,” Perry’s voice comes out in a whisper, as she wipes tears from her eyes. “You’re so vulnerable when you’re in that state after surgery. I couldn’t shower, and I felt disgusting.”

    Harleigh and Tiffany at Riley Children's Health

    But Smith, a new nurse at the time, gave her young patient the extra care she needed. She styled her hair into French braids. She held her hand when the pain was bad.

    Smith doesn’t remember holding her hand, but Perry won’t forget it.

    Hearing Perry tell her now how much that meant to her at the time, though, is a good reminder for Smith.

    “I thought, ‘When was the last time I just sat and held a patient’s hand?’ Healthcare is tiring right now, and it is easy to get into the rhythm of what you have to do, but it’s important to remember the little things like handholding and hair-braiding,” Smith said.

    Because the little things are really big things to some people.

    Graduation party 2018

    “It’s a reminder that you don’t know how much you affect each patient,” Perry said. “You might have four patients today and four more tomorrow, but this might be the one vulnerable person who will remember you forever.”

    For Smith, looking at nursing through a fresh pair of eyes helps her refocus in the midst of COVID fatigue.

    “It’s been refreshing for me to be around her excitement,” she said of Perry, whom she calls a “bright light.”

    “The opportunity to be her capstone preceptor for her final semester of nursing school is such a full-circle, rewarding opportunity for me.”

    On the day that we caught up with Smith and Perry, they were working on the rehab unit at Riley and went in to check on a young patient named Chandler Smith (no relation).

    The 2-year-old’s eyes lit up when they came into the room, and they stood on either side of the bed playing word games with him to boost his vocabulary.

    Smith and Perry high five patient Chandler Smith

    Nearby, a celebration was taking place as another young patient who had just completed treatment rang the discharge bell and pinned his butterfly on the wall.

    Perry watched in awe as the “rehab grad” squealed in delight, “I did it!” He then high-fived and hugged team members who came to say goodbye.

    “Oh my goodness, how sweet is that,” she said. “This just heightens my passion for nursing.”

    This is Perry’s first experience working in a children’s hospital, and she said it brought back a lot of memories from her own hospitalization.

    “I don’t know how to navigate all of my emotions right now.”

    She looks back fondly on a motorcycle ride she did with her dad to raise money for Riley a few years ago.

    Perry on a motorcycle with her father

    “I cried the whole time, especially coming into the hospital and seeing all the nurses.”

    She is not sure where she will land after graduation in May but hopes to find her niche in an Indianapolis-area hospital.

    One thing she is sure of: “If I can give my patients half of the care that Tiffany gave me, I will be an exceptional nurse. Knowing I have the opportunity to learn from her is so incredible, and I am so thankful.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/after-weeks-of-despair-mom-sees-her-son-begin-to-heal After weeks of despair, mom sees her son begin to heal 2022-02-08T08:04:00-05:00 2022-03-30T11:26:57-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    The transformation is nothing short of miraculous if you ask Denise Smith.

    Her 2-year-old son, Chandler, came into Riley Hospital for Children with a severe case of viral encephalitis, an inflammation of the brain caused by an underlying virus.

    It robbed him of his ability to walk, talk, eat and play.

    Chandler sleeps in Riley Hospital for Children

    Her little boy was a shell of the active, happy toddler whose giggle could melt hearts.

    “I was very scared and hopeless at that time,” Smith said from her son’s bedside, where she has been since he was first hospitalized in mid-December.

    “What helped was knowing I could be here all the time and talk to him, whether he heard me or not. And the nurses have been great at helping us through our tougher days,” she said.

    “There have been a lot of tears. As a mom, that’s your baby and when you’re up here by yourself, what are you to do? It’s been very, very stressful.”

    Chandler started out his treatment at a hospital in Richmond, where the family lives, before being transferred to IU Health North Hospital. He was moved down to Riley in Downtown Indianapolis on Christmas Day.

    “The Christmas tree is still up at home,” said Chandler’s grandfather, Steve McClure. “We’re waiting for him to come home.”

    Chandler was transferred to inpatient rehab at Riley in mid-January to begin the long, slow crawl back to independence.

    Riley speech-language pathologist Sarah Sternasty remembers seeing Chandler just before he moved to rehab from the eighth floor.

    He was nonresponsive, she said. He wasn’t opening his eyes or visually tracking. He was in a coma-like state.

    A couple of days later, he was beginning to smile.

    He still had a long way to go, but Sternasty knew then that her young patient might surprise them.

    And so he has.

    Chandler smiles with his toys in his Riley bed

    Chandler, who was expected to spend six weeks in rehab relearning all of his skills and building up his strength, is set to go home Feb. 15 – two weeks earlier than planned.

    “We have moved him up quite a bit because he is making such rapid progress,” said Sternasty, adding that he has been a bright spot in her day.

    That was obvious recently during a visit to the boy’s room as he was chattering with visitors, playing word games with his nurses, blowing kisses and mugging for the camera.

    “He is a happy, happy boy,” his mom said. “Very playful and rambunctious.”

    She worried that she wouldn’t see that same playful kid again when the illness took hold. Viral encephalitis is rare, but it can cause brain damage.

    Symptoms can include high temperature, headache, sensitivity to light, weakness, stiff neck or back, vomiting, personality changes, confusion, memory loss, seizures, paralysis and coma.

    Lucky for Chandler, he is on his way to a remarkable recovery. Sternasty and her team helped wean him from a feeding tube, so he is now back to eating solid food and drinking liquids.

    Because he came into rehab nonverbal, she did a formal language test recently and he performed above average for his age, she said. He remembers all of his words, his mom said proudly.

    He has officially graduated from speech therapy, but he continues to work with physical therapy and occupational therapy to improve his walking skills.

    Smith and Chandler smile at each other

    “He wants to get up and run so bad,” Smith said.

    His grandpa is convinced he’s going to be a stuntman someday.

    Having involved caregivers makes a big difference in recovery, Sternasty said.

    “Mom and Grandma and Grandpa have been super involved and have been really helpful in carrying over things we were doing in therapy, which always helps speed that progress,” she said.

    “A lot of it is just Chandler. We anticipated he would need a lot more therapy and more time. He just kept proving us wrong.”

    If all goes as planned, the little boy with the big personality will have his bell and butterfly celebration – a tradition for rehab grads – a week from today.

    “It’s a big day for him,” Sternasty said. “He’s come a very long way. He made our jobs really easy and fun while he was here.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/meet-dr-melinda-markham-medical-director-of-the-fetal-center-at-riley-childrens-health Meet Dr. Melinda Markham, Medical Director of the Fetal Center 2022-02-06T10:28:00-05:00 2022-05-25T11:11:31-04:00 The Fetal Center provides care for women going through high-risk pregnancies.

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    https://www.rileychildrens.org/connections/baby-bryce-stole-their-hearts-from-day-1 Baby Bryce stole their hearts from Day 1 2022-02-02T16:06:00-05:00 2022-03-25T13:00:41-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    It was at the 20-week ultrasound for their first child that Dylan and Michelle Murphy knew their lives were about to be turned upside down.

    Their baby boy had a heart defect, the couple learned, and he might have complications with his spine and kidneys as well. They were quickly referred to the Riley Children’s Health Maternal Fetal Medicine team.

    The heart condition – tetralogy of Fallot – was bad enough, the couple thought. Their baby’s heart couldn’t pump blood effectively to the rest of his body. It would require pulmonary valve replacement surgery to correct.

    But the rest of it? They didn’t know how to begin to process the news. What they did know is that they didn’t want to turn to Google to find out what might lie ahead.

    Instead, they trusted their doctors, and they found support from other parents whose children had similar diagnoses.

    DIFFICULT DAYS

    “We had some dark times in the pregnancy,” Dylan acknowledged.

    “Your baby being born is supposed to be the happiest day of your life, and for us it was very dark those first few days,” Michelle said.

    Part of that was due to exhaustion, part due to information overload. They remember a line of specialists waiting to see them the Monday morning after their baby’s birth.

    Michelle delivered baby Bryce early on the morning of Sunday, Sept. 19, 2021, at IU Health Methodist Hospital. She had labored for three days before the decision was made to do a C-section.

    Bryce was immediately transferred to Riley’s NICU, but Michelle had to remain at Methodist while recovering. (The couple had hoped to deliver in Riley’s new Maternity Tower, but COVID pushed back the opening to November.)

    Bryce at Riley's NICU

    She knew that she would be allowed to leave Methodist to visit her son at Riley no sooner than 24 hours after a cesearan birth, so at 2:30 a.m. Sept. 20, she was dressed and ready for a police escort to take her the mile distance to Riley.

    As the couple dealt with the devastating news that their baby boy had multiple birth defects, they learned there was a name associated with it all, an acronym really – VACTERL.

    MULTIPLE CHALLENGES

    The V stands for vertebral anomaly, and in fact Bryce has one of the most severe cases of scoliosis (curving of the spine) that Riley neurosurgeon Dr. Laurie Ackerman has ever seen. He likely will be fitted with braces and will undergo surgery when he gets older.

    The A refers to anal atresia, a condition in which the anus doesn’t properly form. Riley surgeon Dr. Barrett Cromeens corrected that defect on Day 3 of Bryce’s life.

    The C stands for cardiac defect, which in Bryce’s case is the tetralogy of Fallot. Dr. Mark Turrentine operated on Bryce to place a shunt after Tet spells were causing a rapid drop in the amount of oxygen in his blood. He will have open-heart surgery at about 9 months to 12 months old to repair his heart. Meanwhile, he is under the care of Riley pediatric cardiologist Dr. Michael Johansen.

    The T and E refer to trachea-esophageal fistula, which Bryce does not have.

    The R is for renal anomalies – Bryce’s kidneys are impacted, though they are functioning for the time being.

    And L refers to limb abnormalities. Bryce’s left ear did not properly form. He will have a hearing device implanted soon, as well as plastic surgery to reconstruct his ear when he is about 5 years old.

    Children diagnosed with VACTERL association typically have at least three of these characteristics; Bryce has five. While VACTERL is not considered a hereditary disorder, the cause is unknown. The family will follow up with the Riley genetics team in March.

    COMFORT AND CARE

    It’s a lot for any parent to deal with, but Dylan and Michelle lean on each other and on their care team, including the NICU and heart center nurses and the NICU Nest team, who helped them through the long days at the hospital.

    Dylan and Michelle hold baby Bryce

    Bryce was at Riley for three weeks after birth, then home for two weeks, then back for 66 days after he developed problems keeping formula down.

    “The nurses were awesome,” Michelle said. “There were moments when one would just stop and hug me and say, ‘Let’s take a walk.’ They were there for us.”

    Those same nurses, social workers, therapists and EVS workers were a lifeline for the couple during Bryce’s extended stay, and they wanted to recognize them, so they emailed Riley President Gil Peri, whom they had met during a virtual visit to Riley by an Indianapolis Colts player.

    The email was compelling and demonstrated Riley’s one-team approach, so Peri invited the Murphys to be special guests at his Riley Town Hall meeting in January, and he invited a large contingent of Riley staff to be there as well – those who had a hand in caring for Bryce.

    The care team with Bryce and his parents

    It was an emotional scene as the care team reunited with Bryce and his parents and Dylan choked up while explaining what they meant to his family.

    “We want to thank you all. You guys meant the world to us,” he said. “As much as you thought you were taking care of Bryce, you were taking care of us.”

    “They were our voice when we weren’t there,” Michelle said later. “They grew to love Bryce, as I’m sure they do all their patients. It just made our heart happy. We had to acknowledge them; they got us through it.”

    A SOCIAL BUTTERFLY

    Bryce is now 4 months old, a happy, chatty baby who doesn’t know a stranger, his mom said.

    “He’s a social butterfly. He loves being around people.”

    Their journey with Bryce is just beginning, but the Murphys already have so much affection for their Riley team and are grateful that the hospital is so close to their home on the southside of Indianapolis.

    Dylan thinks back to some of those early days at Riley and remembers how nurse Kelsi Pomeroy helped him develop the confidence to care for his baby, and how so many others were there to advocate for their child when he and his wife couldn’t be there.

    Michelle leaned on other moms who had gone through similar stressful times with their babies, and now she wants to share their story in hopes that it will help others.

    “Find a support system,” she advises new parents. “Listen to your doctors. It’s hard to know your child is going to be different, but your child is special, so never compare him to another.”

    She remembers something someone along the way told her and wants others to hear it as well.

    “This is your new normal,” she said. “You had a baby. You didn’t lose your baby, your baby is here. But it is OK to grieve what you thought your life was going to be.”

    While they navigate the multiple appointments with Riley specialists and the day-to-day challenges with Bryce’s health, they love talking about their little guy. He is their miracle baby, they said.

    “This is our life. This is our life for a reason,” Michelle said. “And this is his story. We want him to be able to see how far he’s come.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/starting-year-on-right-track-for-childrens-health Starting year on right track for children's health 2022-02-02T13:02:00-05:00 2022-02-02T13:10:40-05:00 While adults often make New Year’s resolutions, January and February is also a good time for parents to help their kids get back on track with healthy habits. Shannon Dillon, MD, a pediatrician with Riley Physicians, offers some tips for making it easier to get the new year off to a healthy start.

    Staying active during the winter months

    “One of the most important things parents can do in January and February is to find ways for their kids to stay active even when the weather is cold,” Dillon says. “Whether it’s sledding, ice skating, building a snowman or just taking a walk, with the right clothing, outdoor play and recreation in the winter can be fun for everyone.”

    Dillon says the tendency to remain indoors in the winter can lead to children spending more time than recommended on screens.

    “The American Academy of Pediatrics recommends that children participate in at least one hour of physical activity per day and have less than two hours of screen time,” she says. “I encourage families to consider the reverse and strive for less than an hour a day of screen time and two hours of being active.”

    Learn more: How can you manage your kids’ screen time?

    When parents have difficulty getting their kids off screens, Dillon suggests negotiating a compromise that for every minute kids are physically active they earn an equal amount of time with their devices.

    “To combat the tendency for kids to be sedentary during the winter, offering a reward for getting up and being active is one way to help ensure children are putting their health first and getting the exercise they need,” she says.

    Prioritizing well-child care

    Before the busy spring and summer seasons, take time early this year to schedule annual primary care or well-child visits. If these visits have been postponed during the pandemic, Dillon says getting back on track with regular well-child visits is important. Children over the age of three should see a primary care doctor for a checkup at least once a year—even if they are healthy and regardless of whether they’ve seen a doctor for illness. (Children younger than age three should see their doctor more often; ask your pediatrician or primary care doctor for the recommended schedule.)

    “Even if your child is well and not experiencing any health issues, there are things we check and screen for at a well-child visit that we don’t do when kids come in for sick visits,” she explains.

    In addition to the general physical exam, well-check visits include:

    • Height and weight check – It’s important for school-age children to continue having their height and weight checked to make sure they are growing at an appropriate rate and not over or under weight.
    • Blood pressure screening – While high blood pressure in children is rare, the only way to monitor blood pressure is to check it regularly.
    • Vision exam – Unless a child is already wearing glasses or seeing an optometrist, most well-child visits include a vision exam. Children, especially those who are younger, may not be aware they are having trouble seeing.
    • Immunization review – A yearly checkup with a pediatrician or family medicine doctor is the best time to make sure all vaccinations are up to date.

    “One of the biggest benefits of coming in for a yearly well visit is that kids and parents get a chance to talk with their doctor and develop a relationship,” Dillon says. “There is time set aside during a well visit for a more thorough conversation about health and well-being, which can really help establish a connection and trust with your child’s doctor.”

    The new year is also a good time to determine whether your child will need a physical to play sports during the year or if health forms or immunization records will be needed for school. Calling the primary care office well in advance of when these visits or forms are needed is a good idea. This is especially true, Dillon says, if you want your children to be seen for well visits or sports physical appointments during the summer or on school breaks when primary care offices are busier.

    Checking in on mental health

    Heading into the second full winter of the pandemic, Dillon advises parents to check in with their kids frequently to see how they’re doing. Mental and emotional issues are more often associated with the middle and high school years, but since the pandemic, Dillon says even kids in elementary school are showing signs of depression and anxiety.

    “With kids of any age, it’s really important to keep the lines of communication open and keep checking in,” she says. “There are things that are out of our control during these uncertain times, but if you can help your kids focus on the silver lining and what is within their control and remains unchanged, it will go a long way in helping them build the skills and resilience they need to thrive in tough situations.”

    Changes in eating or sleeping habits, poor performance in school and withdrawal from activities previously enjoyed are some of the signs your child may be having trouble coping. Dillon suggests contacting your pediatrician or primary care provider for an evaluation as soon as you notice any persistent change in your child’s mood or behavior.

    “We can offer resources for counseling, but with the pandemic, there is a wait for many of these services,” she says. “It’s much better to contact your pediatrician early so we can look into available resources before the issues with your child become more of a problem.”

    Partner with your provider

    A new year is a time for new beginnings. As parents look for ways to improve the health and well-being of their families, establishing a good relationship with primary care providers is important. Plan ahead for the coming year by scheduling well visits and reaching out if you have general questions about your child’s health.

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    https://www.rileychildrens.org/connections/iu-fashion-design-students-share-their-talents-with-riley IU fashion design students share their talents with Riley 2022-02-02T08:03:00-05:00 2022-03-25T12:21:24-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    When Bo Choi’s little boy was a patient at Riley Hospital for Children last year, it was a scary, lonely time. COVID restrictions meant no one could visit, and Choi felt isolated in a time when she needed support more than ever.

    Teddy toddler photo

    Her son, Teddy, now 21 months, was being treated for leukemia, and she was reluctant to leave his side. Luckily for her, art therapist Emily Allbery encouraged her to try art therapy as a way to channel her emotions and explore creative expression.

    Now, Choi is giving back to Riley for all it gave to her.

    She and her fellow fashion design instructors at Indiana University-Bloomington worked with their students to complete a service-learning project last semester that benefits Riley patients and families.

    Delivery of embroidered blankets and tote bags

    On Friday, they delivered colorful, embroidered blankets and tote bags to Riley Cheer Guild Director Ann Hannan, who worked with the group to define the project and connect it to Riley’s mission.

    “Through Bo and her son’s experience here at Riley, she knew firsthand what kinds of things were comforting to her and meaningful to Teddy,” Hannan said.

    “Now she has spread that experience to her colleagues and to her students and has taken that service learning to the next level by making it about real people who have had real experiences here at Riley. You can’t get any better than that.”

    Choi holds the Cheer Guild's tote bag

    Choi said she received a lot of help from the Cheer Guild during her son’s time at Riley – toys, music and art therapy and companionship.

    “When I think about that time, I get emotional,” she said. “Without those things, I don’t think I could have survived, especially in COVID times.”

    When Allbery suggested Choi do something for herself, she tried embroidery, something she hadn’t done before. It helped clear her mind, she said, and she was able to create items for her son that brought them both happiness.

    “I thought about combining these things – the Cheer Guild needs donations, and our students want to design and create things that are meaningful,” Choi said.

    Hannan visited the design class twice via Zoom to give students a look behind the scenes at the Riley Toy Room and the supporting therapies that are offered to patients.

    Fashion design Professor Deb Christiansen said Riley was a great partner for this service-learning experience, and she credited the Cheer Guild for helping make the project come alive for students.

    Professor Lori Frye agreed, saying the students enjoyed being able to apply their skills to make something they knew would be valued.

    Blanket

    Hannan said the donated blankets (which fold up into pillows) will be scanned in radiology to ensure no pins or needles were inadvertently left in the material.

    “It’s just another way our Riley staff partner to keep our kids safe,” she said.

    The wrapped blankets will be placed on the shelves of the toy room for distribution by child life specialists, therapists and nurses, who can give them to families to be taken home as a comfort item. Donated bedding items cannot be used in the hospital, though the tote bags can be used in the rooms.

    Hannan feels blessed that the design students and their instructors were moved to donate to Riley.

    “To have people who really care about the children here at Riley designing something for them so their experience can be as beautiful as possible means so much.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/patient-receives-care-at-orthopedic-walk-in-clinic-at-riley-childrens-health-at-iu-health-north-hospital Patient receives care at Orthopedic Walk-In Clinic at Riley Children's Health at IU Health North 2022-02-01T09:19:00-05:00 2022-05-05T14:38:35-04:00 The walk-in clinic provides immediate access to a pediatric orthopedic specialist. Patients age 14 and younger can be seen for treatment of recent injuries, sprains or broken bones without needing an appointment.

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    https://www.rileychildrens.org/connections/pharah-rocks-a-tutu-for-her-last-chemo-treatment Pharah rocks a tutu for her last chemo treatment 2022-01-31T16:33:00-05:00 2022-04-11T14:19:53-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Pharah Paul has the modeling moves down pat. She struts, she tilts her head just so, and she flashes her winning smile for the camera.

    Pharah is only 4, but fashion has a friend in her. On this day, she is sporting a colorful hospital gown, and she even does that with flair, especially when she accessorizes with rainbow slippers.

    Last year, her “friends in red” put on a fashion show with her as the star, sashaying down the halls of 5 West at Riley Hospital for Children.

    Those friends, the Riley nurses, love Pharah for all the joy she brings to the oncology unit at Riley. Everyone wants to be in her orbit.

    Pharah Paul

    On Sunday, they said goodbye to their popular patient with appropriate fanfare – noisemakers, cheers and singing. Pharah was rocking a purple light-up tutu and a pink shirt that mapped out her cancer journey since she was diagnosed in January of last year.

    The Evansville preschooler finished up treatment for Wilms tumor over the weekend. Wilms tumor is a solid cancerous tumor of the kidney that forms from immature kidney cells. The tumor had metastasized in Pharah, spreading to one lung and her other kidney.

    Riley surgeon Dr. Troy Markel removed her right kidney, where the cancer had first taken hold, along with a portion of her left kidney. What followed was radiation and chemotherapy to beat back the cancer.

    Pharah Paul

    It’s been a long year for her parents, Craig and Natalie, but the support they’ve received from friends, family and the Riley team has sustained them.

    “It kept Natalie and I lifted up,” Craig said. “Obviously, we had our bad times, but everybody around us made it so much easier to cope. I can’t imagine families going through this who don’t have that support system.”

    The family, which includes baby sister Charley and a little one on the way, has been consumed with Pharah’s fight, but they have found joy along the way – because that’s who Pharah is.

    During her final treatment at Riley last week, her room was across from the playroom on the fifth floor, so she begged to be taken over there.

    Pharah Paul

    She wanted to play “hockeytucky” (better known as air hockey), she wanted to cook dinner in the pretend kitchen, she wanted to give her baby doll a bath, and she wanted to try out the rocking chair.

    “It fits me!” she said with glee when she plopped into the tiny chair.

    Pharah Paul

    Craig Paul hopes that this is all his daughter remembers about her many trips to Riley – the good times.

    “She loves all her friends here. When she’s here, she gets treated like a queen,” he laughed.

    Returning to Riley last week for her last inpatient chemo treatment was a full-circle moment for sure, he said. Not the least because her room on 5W was the same room she was in one year ago when her parents were given her diagnosis.

    “We were scared to death when this happened,” Craig recalled. “I remember thinking, I’m her dad and I can’t fix this.”

    It seems like just yesterday, he said, that he and Natalie were sitting in that same room while Dr. Tyler Severance, Pharah’s oncologist, was explaining the cancer and how they would attack it.

    “Stuff like this can tear families apart,” Craig said. “We decided that night that we’re not going to let that happen to us. We’re gonna fight like hell to make sure she gets better, and it has made Natalie and me a lot stronger. We love that Pharah sees that and she can look back at the happy stuff.”

    Dr. Severance said seeing Pharah in the room where it all began was a surreal moment for him and the team as well, but he is optimistic about her future, noting that Wilms is a highly curable tumor, and Pharah is now disease-free.

    Pharah Paul

    “As a cancer survivor, Pharah has already taken everything we can throw at this,” he said. “She has seen so many types of chemotherapy and surgery and radiation, and she came out the other side smiling and positive as ever.”

    While treatment has ended, she will return to the Riley clinic every three months for labs and scans, guarding against not only a return of disease but also any long-term effects from the cancer and resulting therapies, particularly as it relates to her remaining kidney.

    “There can be a lot of anxiety with those visits, but Pharah will get her family through whatever needs to be done,” Dr. Severance said.

    For now, the Paul family is settling into a new home, with plenty of room for Pharah and her siblings and all of their toys. It’s a new beginning, Craig says. “We can’t wait.”

    Pharah Paul

    He and Natalie are grateful for the care their daughter has received at Riley and hope that sharing their story helps other families find light in the darkness.

    For his part, Dr. Severance said treating Pharah has been rejuvenating.

    “On a busy clinic day, you walk into the room, and she just perks up, smiles and gets excited. She loves to see you,” he said. “You’re happy in those encounters and it carries with you throughout the day.”

    And while Pharah and her family have embraced Riley and all it offers, “I would say that Riley is also better because we have known Pharah,” Dr. Severance said.

    “On the inpatient side and the clinic side and everybody they’ve met in between, we’re all just better off because we’ve gotten to know her and her family.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    Previous stories:

    “Hi, I’m Pharah Paul.” This little girl has captured the hearts of her Riley team - A tiny fashionista with a personality to match, who just so happens to have cancer. Oncologist Tyler Severance is among those under her spell: “Everybody is absolutely in love with her.”

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    https://www.rileychildrens.org/connections/after-a-rough-year-her-dream-is-to-meet-taylor-swift After a rough year, her dream is to meet Taylor Swift 2022-01-30T16:42:00-05:00 2022-03-30T10:34:08-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    She’s just 4-foot-3, a whisper over 73 pounds and a die-hard Taylor Swift fan – a Swiftie.

    And she’s a recent high school graduate.

    Maddie Whitesel has had one heck of a year. Now 19, she nearly died at a Fort Wayne hospital when she went into cardiac arrest after surgery on Easter weekend last April.

    Maddie wears her Taylor Swift shirt at Riley Children's Hospital

    The diminutive teen suffers from severe scoliosis (curvature of the spine) and neurofibromatosis type 1 (a genetic condition that can cause bone deformities and noncancerous tumors to form in the brain, spinal cord and nerves).

    Doctors can’t say with certainty, but it’s likely that one or both of those conditions contributed to her troubles last spring.

    She was hospitalized with severe stomach pain on a Friday night and underwent exploratory surgery and a bowel resection. Surgeons found her colon twisted and purple, her mom said, so they removed the decaying part and patched her back up.

    Maddie was on a ventilator to help her breathe after the surgery when she went into cardiac arrest.

    Her parents, Kat and Cory Whitesel, rushed back to the hospital, where Maddie was eventually stabilized, though resuscitation efforts resulted in her suffering broken ribs. Not long after her parents returned home, they received a call that Maddie was headed back into surgery to stop internal bleeding. Eventually, surgeons had to remove most of her small intestine.

    Maddie was so ill that doctors determined she would be better off at Riley Hospital for Children, so she was LifeLined to Indianapolis on April 5. She would spend the next two months at Riley, where she suffered kidney failure and a host of other complications.

    Among her care team at Riley was surgeon Dr. Brian Gray, who describes her as “an inspiring kid,” and gastroenterologist Dr. Kanika Puri, who remembers a very sick young lady.

    “She has come a really long way,” Dr. Puri said, adding that Maddie’s scoliosis and earlier surgeries to correct that condition likely contributed to her intestinal problems.

    Today, doctor and patient are together again at Riley for a checkup, and Maddie is sporting one of her favorite Taylor Swift T-shirts. Around her neck is a special key – a vault key, she says – that gives her access to more of Taylor’s music.

    Vault key with Taylor Swift

    “I’m a die-hard Swiftie,” she says, tracing her fangirl status back a decade or more.

    That was right about the time she had her first scoliosis surgery at another hospital, a procedure that was unsuccessful.

    She is a member of Taylor Nation – the artist’s fan club – and has her own fan page on TikTok with more than 6,000 followers, along with a room full of Taylor merchandise.

    “Obsessed” is an understatement, her dad says with a laugh.

    Obsession or not, it brings her joy and helps her deal with her medical challenges, she says. Her mom agrees, noting how the Riley nurses – “rockstars” she calls them – played Taylor’s music for their patient to keep her calm during many dark days and nights.

    “Maddie is one strong girl,” Dr. Puri said. “She has endured a lot throughout her life and more so during the past year.”

    Maddie shrugs off her medical conditions; she is used to regular hospital and doctor visits. But when she talks about dreams and goals, two stand out: She wants to gain weight, eventually reaching 100 pounds, and she wants to meet Taylor Swift – but not necessarily in that order.

    Her biggest thrill to date was attending a Taylor Swift concert in Indianapolis with her mom in 2018. And they weren’t up in the rafters. They had floor seats.

    “I wish I could go back and do it again,” Maddie said.

    Maddie and her dad drove down to Riley from Fort Wayne early on a Thursday morning to see Dr. Puri. Kat couldn’t be there in person for the visit, so she attended virtually by way of Maddie’s phone.

    Also on hand were a Riley pharmacist and nutritionist. Everyone wants to know how she is eating and taking her meds. Her labs look good, her kidneys have recovered, and the central line where she receives TPN supplementary nutrition is fine, Dr. Puri said.

    But her weight gain has stalled, so the GI doctor wants her to keep a food diary to better understand what she is eating and how many calories she is taking in.

    “I want to be able to decrease the TPN, but I don’t want you to start losing,” Dr. Puri told Maddie.

    Dr. Puri and Maddie

    The teen can eat normally – her favorite foods are chicken, enchiladas and ice cream – but absorbing enough nutrients when dealing with “short gut syndrome” can be difficult. That’s why she receives supplemental nutrition.

    She follows up with Dr. Puri every month or so, sometimes in Indy, sometimes in Fort Wayne.

    Life for Maddie is pretty normal, her mom says, now that she has weaned herself off extra oxygen and regained enough strength to walk on her own.

    In fact, her high school graduation was the day after she left Riley last June, and Maddie accepted her diploma while leaning on a teacher for support.

    “The crowd roared,” Kat said.

    It was a nice moment, Maddie said, after acknowledging that she felt “invisible” during most of her high school career.

    “I was proud of myself for getting up there,” she said. “I wasn’t really expecting people to clap and cheer.”

    Her daughter is a pretty positive person, despite her hardships, Kat said.

    “She’s always been that way. She’s a big fighter with all she’s been through.”

    Maddie’s education and career goals are undefined at this point, but ask her what her dream job would be and she doesn’t miss a beat.

    “Working for Taylor Swift.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/your-asthma-doesnt-like-winter Your asthma doesn't like winter 2022-01-27T17:29:00-05:00 2022-01-27T17:51:47-05:00 Has cold, winter wind ever made you cough? While the sensation may be harsh, most people are on their way with no lasting issues after a few moments.

    But when you have asthma, and about 25 million Americans do, you may need medical help to get breathing right again.

    Wyncel Chan, MD, Riley Pediatrics pediatrician in Bedford, Indiana, says:

    “Cold air is drier and evaporates faster than warm air, causing swelling and irritation in the lungs. Cold air also triggers histamines, which causes wheezing and mucus production. This causes more irritation, and the increased mucus traps in viruses more, which can cause long-term infections. It’s why a person with asthma could potentially have more infections than someone without asthma.”

    Dr. Chan describes asthma as a swelling of the airways, which causes narrowing of the paths air needs to travel through, especially the deeper you go into the lungs. That makes it harder for the oxygen to travel to the tiny pathways that bring oxygen to your blood.

    When a person with asthma breaths in cold air, or is exposed to another trigger like cigarette smoke, the swelling increases and impedes a person’s ability to breath.

    “And that is why sometimes it feels like things get stuck and you have to cough a little bit more, or it hurts—it’s because those little particles of oxygen that are trying to make their way through,” she says.

    One way to reduce the risk of triggering your asthma is to stay out of the cold, and to wear a mask or a scarf over your mouth and nose if you are out in cold temperatures. That will keep the air you’re breathing warmer and less dry.

    And when an asthmatic reaction is triggered, there are options to help you breath.

    Dr. Chan says people with mild/intermittent asthma have symptoms less than twice a week and can use a rescue inhaler to open their airways immediately.

    “Rescue inhalers aren’t for daily use,” says Dr. Chan. “And if you do need it daily, you should definitely talk to your provider to see if you need more help.”

    Dr. Chan says that when parents say their child is coughing every night, or they’re using their rescue inhaler multiple times a week, or even multiple times a day—that’s a sign they may need a controller medication.

    “This is an inhaled steroid medication used every day to help decrease inflammation at baseline. And you would use your rescue inhaler in conjunction as well, for those major flare-ups,” Dr. Chan explains.

    These medications are essential for long-term health when you have asthma. If you need a controller medication and don’t use it, your lungs can be irritated constantly which may worsen your asthma symptoms in the long run.

    Asthma isn’t curable, but it doesn’t have to be scary. Your doctor is your partner in making sure you have what you need, so make sure to ask questions and tell them about your concerns.

    “And don’t be afraid to ask for an asthma action plan, which is where we as providers put it plain and simple when to use the inhaler or a medication, how often to use it, when to call the doctor and when to go to the hospital,” says Dr. Chan. “That should be in everybody’s asthma regiment.”

    Learn more about asthma.

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    https://www.rileychildrens.org/connections/tender-hospital-moment-brings-out-the-smiles Tender hospital moment brings out the smiles 2022-01-26T08:53:00-05:00 2022-04-11T14:27:02-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Talk about putting a smile on your face …

    The photos we shared last week of Dr. Mark Hoyer dressed in scrubs and intently sewing up a stuffed monkey for a patient had people positively grinning.

    Dr. Mark Hoyer

    So we decided to peel back the mask hiding not only Dr. Hoyer’s face and the monkey’s mug, but also reveal the patient whose request sparked the tender moment.

    Lexie McGrath, 10, has a heart condition and has been a patient of Dr. Hoyer’s for several years. The fifth-grader was at Riley Hospital for Children for a heart catheterization procedure last month, and she was a tad anxious. Who wouldn’t be?

    She had brought along her old pal, Mississippi the monkey, for moral support, along with her parents, Julie and Susan McGrath.

    Dr. Mark Hoyer

    Why the name Mississippi? When she was little, Lexie used to say “Sippy” all the time, Julie explained. She wanted her monkey to be a girl, so somehow she put the two together to come up with Mississippi.

    As she waited to go back for the heart cath, Lexie fiddled with the monkey and a string came loose, leaving Mississippi with a droopy face.

    “She got so upset when the thread came undone,” Julie said.

    But Cath Lab nurse Lisa Bauermeister took note of the situation and asked Dr. Hoyer if he might have time to see another “patient” that morning. The cardiologist was all in.

    While Lexie was in recovery from the outpatient procedure, Dr. Hoyer got to work on Mississippi with a pair of surgical scissors and a sewing kit he keeps at the office.

    Dr. Mark Hoyer

    “There wasn’t much room to work on the face,” Dr. Hoyer said with a laugh. “But we got it done and it was fun.”

    And Bauermeister had the good sense to snap a couple photos of the doctor with his floppy patient.

    It’s not the first time he’s tried to put a smile on a patient’s face, but this just might have been the first surgical repair job to a stuffed animal, said the father of three children and grandfather of seven (soon to be eight).

    “Obviously, it’s a privilege to take care of these kids and hopefully do right by them,” said the physician, who has been a Riley cardiologist since 2000. “That’s what they deserve.”

    Dr. Mark Hoyer

    Lexie’s reaction when she woke up to a smiling monkey was precious, her mom said.

    “She was so happy. When we saw it, we just got all teary,” Julie said. “Who would have gone that extra step? We didn’t expect it, but to see that he had taken the time to do that just showed the extraordinary ways that he takes care of his patients. He’s an extremely kind man.”

    And he’s not alone, she said.

    “Everybody at Riley is amazing.”

    Dr. Hoyer, who doesn’t have a Facebook or Instagram account, was surprised to hear about the hubbub his photo caused on the social media platforms.

    “It’s a humbling feeling,” he said.

    Dr. Mark Hoyer

    We thought it only right to share with him just a handful of the 140-plus comments on the Riley Children’s Facebook page:

    “What a wonderful doctor and person! God bless him!”

    “A very big virtual hug to you Dr. Hoyer. The kindness you showed is a true blessing.”

    “Dr. Mark Hoyer is one of a kind! He’s a superhero in and out of the operating room. Thanks for all you do for the kids at Riley.”

    “What a wonderful story! God bless our healthcare workers!”

    “Another reason to love Riley Hospital! It’s amazing how gentle, loving and thoughtful these people are. Been through a lot with a child of my own there and now grandbabies going there.”

    “This makes my heart smile.”

    Not one to seek the limelight, Dr. Hoyer says there is plenty of praise to go around.

    “We have a great nursing team and an environment that is really like a family,” he said. “We have a great working relationship, and we have fun.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    Has a team member at Riley done something special for you or your child? We’d like to hear about it. Drop a note in the comments or email mgilmer1@iuhealth.org.

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    https://www.rileychildrens.org/connections/cathedral-works-with-riley-to-become-a-heart-safe-school Cathedral works with Riley to become a Heart Safe School 2022-01-24T17:12:00-05:00 2022-04-04T13:47:12-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Jeff Utzinger owes his life to a stranger who took a chance.

    Utzinger was on a run in his Carmel neighborhood four years ago when he collapsed without warning. He has no memory of what happened next, but thanks to that stranger and quick intervention by first responders, his life was not only saved, but forever changed.

    “I was saved by CPR and an AED (automated external defibrillator). I was saved by a gentleman in my neighborhood who I didn’t know at the time, but he’s a pretty good friend now,” Utzinger said with a smile.

    He connected with his neighbor/rescuer later – Bill Schlies – and the two would go on to work together through the Be Like Bill nonprofit to raise awareness of lifesaving intervention in the event of a cardiac emergency.

    Utzinger and supporters for Be Like Bill

    “He stopped and did what I think a lot of people might have hesitated to do,” Utzinger said of his neighbor. “He called 911 and they walked him through about four minutes of CPR until a cop showed up with an AED.”

    He might have died

    Utzinger, then 46 and healthy, had suffered sudden cardiac arrest, the abrupt loss of heart function, breathing and consciousness. The condition usually results from a problem with the heart's electrical system, which disrupts the heart's pumping action and stops blood flow to the body.

    Outside of a hospital, survival rates after sudden cardiac arrest are often dismal, less than 10%. But with prompt action, namely chest compressions and the use of an AED, that rate soars to more than 70%.

    Utzinger had the benefit of both. Now fully recovered and running again, he has become a champion for AED access and training.

    That’s what brought him to Cathedral High School last week when it was officially recognized as the first Indianapolis school to be designated a Heart Safe School by Project ADAM and Riley Hospital for Children.

    Dr. Adam Kean, a cardiologist at Riley, was on hand for the certification at Cathedral as well. He has a vested interest in the heart health of young Hoosiers and is championing the Heart Safe School program to ensure that more people are trained in the use of AEDs.

    Project ADAM (no relation to Dr. Kean) is named for a Wisconsin high school basketball player who died after collapsing on the court in 1997. Designed to improve cardiac arrest preparedness in schools and other places where young people gather, it encourages partnerships between healthcare affiliates and schools to establish emergency plans and cardiac response teams.

    Prepared for emergency

    Many schools have AEDS, but not enough people know how to use them, Dr. Kean said.

    “It’s all well and good to have the equipment, but you have to practice with it. That’s where the Heart Safe designation is key. We want everyone around to feel empowered to use one of these things in an emergency,” Dr. Kean said in an earlier interview.

    “There is phenomenal data to support the fact that … if there is a tragedy, we can come to the rescue, and when I say ‘we,’ I mean we as a community, not just as a hospital.”

    As the largest children’s hospital in the state, Riley’s mission is to save lives, but that extends beyond the hospital’s walls into the wider community. And one way to do that is to provide education and training in the proper use of AEDs.

    Utzinger professional photo

    Today, Utzinger is the picture of health, he jokes. There was no underlying condition that predisposed him to sudden cardiac arrest.

    “Something just misfired. After I got my head around what had happened and realized how lucky I was, I became a big advocate for AEDs.”

    But it was connecting with Dr. Kean that helped him focus his efforts on making sure schools and other organizations not only have the devices but have plenty of people on staff trained to use them.

    Cathedral made sense first because Utzinger is a Cathedral parent whose kids play sports, but he is eager to introduce Project ADAM to other Indianapolis-area high schools. A school in northern Indiana became the first certified school in the state last year.

    Point of pride

    Mike Hunker, Cathedral athletic trainer, said while his school has been proactive in acquiring AEDs and getting its 150 staff members trained, partnering with Project ADAM and Riley adds an extra layer of quality and credibility.

    Calling it the culmination of a lot of work by a lot of people, Hunker said the Heart Safe School designation is a point of tremendous pride for school administrators, teachers, coaches and staff.

    “We had a lot of the pieces in place – the training and AEDs – but there were other things we could do better,” he said. “I looked at this as a great opportunity for us to review what we were doing and improve what we were doing to ensure our students, our staff and our families are in a safe environment.”

    Cathedral already had invested heavily in AEDs – there are eight in and around its central campus and three more at its off-campus sports facilities. They are strategically located so that they can be accessed and applied within three minutes of a recognized cardiac emergency.

    “Dr. Kean working with us has been great,” Hunker said. “He has provided good insight into what we’re doing and how we’re doing. It’s been a great collaboration.”

    What would you do?

    To this day, Utzinger wonders if he would have had the courage to do what his neighbor Bill Schlies did that June day in 2017. Schlies was driving by when he saw Utzinger collapsed on the side of the road.

    “I’d like to think I would have called 911 and jumped in to do CPR, but you don’t know how you’re going to react when something like this happens,” Utzinger said.

    Now, he is most excited that another generation of kids and teachers will not only know what to do at school if they are faced with an emergency like his, but they will take that knowledge with them wherever they go.

    Dr. Kean said he is hopeful that Cathedral is the first of many Indianapolis-area schools to be Heart Safe-certified.

    “It is wonderful to get that accomplished especially in the setting of COVID,” he said, “no mean feat given all the restrictions.”

    “This is hopefully the tip of the iceberg, with the idea that we can start to work with as many school districts as possible to really support the health and safety of all of our kids in the city and ultimately the state.”

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    https://www.rileychildrens.org/connections/she-has-earned-her-time-in-the-sun She has earned her time in the sun 2022-01-20T16:17:00-05:00 2022-04-11T10:21:55-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    When Velda Green looks out onto the calm waters of the Gulf of Mexico, she can let her mind wander. This is what retirement looks like.

    Green said goodbye to a long career at Riley Hospital for Children last month, and the beach lover soon set her sights on a winter vacation in Florida with her rescue dog, Kya, by her side.

    Velda Green with teammates at Riley Hospital for Children

    Her colleagues in the pediatric neurosurgery department at Riley lavished gifts and praise on her during a retirement gathering, and she still gets emotional thinking about it.

    “It’s been such a huge part of my life,” she said this week from Florida, the day after storms blew through, leaving her shivering in 50-degree temperatures and shaking off an early morning tornado warning. “It’s hard to think about not going in to work every day.”

    Green retired as practice manager of the IU Health Physicians pediatric neurosurgery unit at Riley, a role that grew and evolved over the years. What didn’t change was her earnest and compassionate approach – whether dealing with doctors, patients or parents.

    SHE WAS THE CONDUCTOR

    To hear her colleagues tell it, Green kept the train on the track most days.

    “She helped me get my feet on the ground coming here as a fellow,” said Dr. Laurie Ackerman, “and got me started as a new staff physician.”

    She helped guide the group through numerous transitions over the years, Dr. Ackerman said, not only organizationally but also in the level of care provided and the technology that supported all of the changes.

    “She saw it all,” Dr. Ackerman said. “She deftly handled phone calls from parents and always knew when someone needed to come in ASAP and to boot it up to the doctor on call. She participated in fundraiser walks. She was skilled, she was there, and she outperformed everyone around her.”

    Dr. Jeffrey Raskin said that for 40 years, Green was the “unchanging heart and soul of pediatric neurosurgery” and will be profoundly missed.

    Riley Hospital for Children team member

    “She must have onboarded 30 or more neurosurgeons over her career and helped facilitate the care of many thousands of children,” he said. “More recently during the pandemic, Velda often was the only administrator in the office, pressing forward on the gas of the administrative gears of the medical system so we could continue to deliver much-needed care to our patients.”

    SHE WAS HOOKED EARLY

    Green’s interest in neurosurgery was sparked a half-century ago when her dad, a dairy and grain farmer, was diagnosed with a brain tumor while she was a junior in high school. Dr. Robert Campbell, then director of neurological surgery at Indiana University Medical Center, removed the tumor in 1972.

    “I was hooked on neurosurgery to start with,” she said. “It was fascinating to me.”

    She went to school to become a nurse, but dropped out, “young and dumb,” she said, speaking with the benefit of wisdom that comes with age.

    “I regret that,” she said. “If I had finished my nursing degree, I would have loved to have been an operating room nurse. It’s always been fascinating to me how surgeons did such amazing things.”

    But she did the next best thing in her mind, and that was working with and for some of the best neurosurgeons in the field. From the day she started her first job as a billing clerk and bookkeeper for the former Indianapolis Neurosurgery Group in 1977, she reveled in the knowledge she gained and the role she played in supporting the physicians and patients.

    She followed Dr. Thomas Luerssen over to Riley in 1988 when he became the hospital’s first director of pediatric neurosurgery.

    “I loved the fact that we were able to make a difference for children’s families,” Green said. “When a parent hears that their child has a brain tumor or a spinal cord tumor, they think the worst. That’s not always the case. To be able to provide a glimmer of hope, knowing we could provide the best available care, was rewarding,” she said.

    And making a family’s journey a little easier during a difficult time meant the world.

    Green also took pride in helping to facilitate a pediatric neurosurgery fellowship at Riley, which attracted top-notch surgeons like Dr. Ackerman, who would go on to stay at Riley. Green believed strongly in her duty to set the fellows up for success – making sure they had the resources and training they needed and that expectations were clearly outlined.

    Quite a few staff physicians have come and gone over the decades, a reality that has helped Green come to terms with her own departure. She used to think the department would collapse when a longtime physician left, but that never happened.

    And while some wonder who they’ll go to with any number of questions now, she is reassuring.

    “I didn’t know all the answers, but I had developed relationships with a lot of people throughout the organization and knew how to find the answer,” she said.

    The same will hold true in her absence, she believes.

    SWEET MEMORIES

    Green gets teary-eyed when she talks about one of her last days at Riley. The team surprised her with thoughtful gifts that they knew she would love – cookbooks and Asian spices, a tripod for birdwatching, a crystal vase for her flowers, a leather-bound journal and a membership to a book-of-the-month club. Not to mention, several snazzy beach-related items.

    Perhaps her most prized gift was a scrapbook filled with memories pulled together by administrative coordinator Madison Demuth.

    Scores of notes and pictures from people at Riley and others who came through the organization decades ago pay tribute to Green for her unfailing support and leadership over the years.

    “It was so touching. You don’t realize the impact you have,” she said. “I was overcome.”

    Green, whose husband passed away in 2016, is spending a couple months in Florida before heading back to her six-acre property in Coatesville, Indiana, where family members are caring for her cat, Barnes, a “majestic beast” at 20 pounds, she laughed.

    Green's cat Barnes with her dog

    While her Riley friends miss her, they know that she has more than earned her time in the sun, with her beloved pets by her side.

    “I miss Velda in the office every day, for all the reasons and the roles she served,” Dr. Raskin said.

    Besides managing the administrative side of pediatric neurosurgery, she was a confidant, adviser, mentor and friend.

    “She would tell you like it is, whether you wanted to hear it or not, but she was always compassionate and understanding,” he said. “I am so thankful for the time I spent learning from her and the friendship I made with her.”

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    https://www.rileychildrens.org/connections/she-was-called-to-a-career-in-medicine-as-a-little-girl She was called to a career in medicine as a little girl 2022-01-20T09:10:00-05:00 2022-03-30T11:03:25-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    From the time she was a little girl, Lauren Logan knew she was going to be a doctor.

    She might not have understood what diabetes was, but she saw how it shaped her baby brother’s life and the lives of everyone around him, and she wanted to learn more.

    Childhood photo of Lauren and Alex

    Born and raised in a small town in Kentucky, she was about 5 when her brother Alex was diagnosed at 17 months old with type 1 diabetes. For as long as they both can remember, the condition was top of mind, affecting all members of the family in some way.

    Type 1 diabetes is a chronic condition in which the pancreas produces little or no insulin, the hormone needed to allow sugar to enter cells to produce energy. While there is no cure, treatment focuses on managing blood sugar levels, diet and lifestyle to prevent complications.

    Fast-forward 25 years and that little girl has become a doctor, while her brother is managing his diabetes well as an adult.

    Dr. Lauren Logan is in her first year of fellowship in pediatric endocrinology at Riley Hospital for Children, after completing her three-year residency here.

    “I just feel like I was called to pursue this field for other families,” she said. “I was always very interested in all of it.”

    Person behind the patient

    She might not have been able to spell the words back then, but she says she knew in elementary school that she wanted to be a pediatric endocrinologist.

    “I remember tagging along with my mom and brother on doctor visits, and my mom would tell me the good and bad parts of the visits. She said what she looked for in a provider was someone who knew my brother by name and not just as a patient with diabetes,” Dr. Logan recalled.

    “I thought to myself, ‘I’ll do that. I’ll be that person.’”

    And today she is.

    “At Riley, I hope my patients know I care about more than just what they’re seeing me for. I try to learn about their life and the things they’re interested in,” she said.

    “I definitely feel that’s the environment at Riley. It’s been such a great place to train and to learn because I feel that’s a big priority of all the attendings and all the staff – they really care about all the kids,” she said.

    “We want to take care of whatever they’re here for, but we also really care about them as people.”

    Husband was a Riley kid

    Dr. Logan has a special place in her heart for Riley because her husband, Ryan, was a patient as a teenager. The two bonded over their shared connection when they first met a few years ago.

    “He has the utmost respect for Riley, and I’m so thankful my husband is here. Without Riley, I wouldn’t have gotten to meet him.”

    Dr. Logan wedding photo

    As a fellow, Dr. Logan does inpatient rounds and works in clinic most weeks, and there is dedicated time for research. For her, the best part of endocrinology is all of it.

    She might see one patient for diabetes, another for early or delayed puberty, and another for adrenal gland or thyroid issues.

    “The day is never boring,” she said. “I love it all.”

    She shares advice from her own mom when talking with some of her teenage patients who struggle with their illness.

    “When my brother was feeling isolated because of his diabetes, she’d say, ‘Everyone is dealing with something. This just happens to be your something.’ I say that quite a bit to our teenage patients who are struggling with teenage things and feeling isolated with their condition.”

    The health journey she and her family have been on has made them all stronger, she said.

    Listen to parents

    Dr. Logan values forming connections with patients and families. She recalls one young patient and his mother, who reminded her of the importance of a parent’s intuition.

    The little boy came into the Riley ICU when Dr. Logan was doing her residency. His diagnosis was unclear, and it was early in the days of Covid, so only one parent could be at the bedside.

    Dr. Logan sat with the child and the mom at some point every day until they were able to get a diagnosis for the baby.

    “I knew how hard it was to not know the answer and for her to be isolated. We really bonded and got through that hard time.”

    It was the doctor’s own mom who impressed upon her the importance of a mother’s intuition.

    “I’ve seen how true that is time and time again during my training,” she said. “Medicine alone may not provide us all of the answers in a single moment. That’s the beauty of the field; we learn new things every single day.”

    Dr. Logan at Riley Hospital for Children

    The pandemic, she said, is a perfect example of how physicians use what they know at a point in time to take care of patients, then adjust and adapt that care as new information is discovered.

    “If we as providers have a patient that doesn’t quite fit with the diagnosis we initially had in mind, if there’s a piece of the puzzle missing, it is especially important to listen to the parent’s intuition and consider other possibilities,” Dr. Logan said.

    That’s what she did in the case of this particular boy, and it paid off.

    “I’m so thankful we were ultimately able to find the right diagnosis for my patient so his parents can watch him grow into a spunky little boy with so much opportunity ahead of him. His mom is an amazing advocate for him. I’m very grateful for the lessons I learned from getting to know them and will carry those lessons with me for the rest of my career.”

    Good energy

    Riley is a place of good energy, she says. She knew it from the moment she stepped inside the hospital. She was interviewing for residency placements, and Riley was her second-to-last stop.

    “I kind of had an idea of where I would go, but then I walked into Riley and I got this feeling … this is such a special place. I saw how everyone interacted with each other, and everyone is so great with the patients.”

    And she felt as a resident, she would be joining a program where she and her peers would be challenged but cared for at the same time.

    “I felt I could come here to learn and train and finally do what I’ve studied my whole life to do. I think it was a God thing. I just felt it.”

    As hard and as exhausting as it was, she says she enjoyed just about every specialty she rotated through.

    “I learned that pediatrics is an extreme field – when it’s good, it’s really good and exciting. But when it’s sad, it’s heartbreaking because it’s a kid.”

    In the end though, it’s all worth it, she said, pandemic or not.

    “It’s worth the late nights and the stress if you really feel called to the profession. At Riley, all the fields work together as a big team. I see that all the time with our kids who see multiple specialists. It’s all been worth it to get here.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/turning-the-page-on-a-nicu-stay Turning the page on a NICU stay 2022-01-17T15:40:00-05:00 2022-03-30T11:41:49-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Four years ago, Shecara and Thomas Reives were lost in an unfamiliar world of doctors, hospitals and frightening medical terms.

    Their twin boys, the Brownsburg couple’s first children, were delivered three months’ prematurely at IU Health West Hospital.

    As expected, identical twins Carmine and Rook came into the world with a host of medical problems, and sadly, Rook did not survive. The little boy whose name is a nod to his father and grandfather’s love for chess, passed away after just nine days.

    Carmine at Riley Children's Health

    But his brother, now a preschooler, is thriving. It started with his medical care, of course, and he made the rounds, first at IU West, before being transferred to IU Health Methodist Hospital. He moved on to IU Health North Hospital and finally Riley Hospital for Children when he was about 5 weeks old.

    His care continued with his parents, who spent hours reading to him from children’s books. Is it any wonder then that the family would seek to honor Rook’s memory with the magic of books?

    When Carmine was discharged from Riley after six months, he came home on a trach and vent to help him breathe. Shecara began searching for children’s books designed to highlight living with a trach but didn’t find what she wanted. So eventually, she wrote her own.

    While she enjoyed writing poetry in school, she hadn’t put pen to paper since her father passed away 10 years ago. Her twins were born on what would have been his 50th birthday.

    Those months they spent in the NICU might have presented an opportunity to journal, but Shecara didn’t have the focus she thought she needed. It wasn’t until much later that she decided to write not one, but two books: “I Made It: A Trach Baby Story” and “I Made It: Welcome to the NICU.”

    The couple published both books last year after spending much of the previous year working from home during the pandemic. Before Christmas, they donated hundreds of those books, as well as hundreds of others collected in their second annual Holiday NICU Book Drive, to Riley Hospital.

    “After we lost Rook, we were just praying that we could bring at least one baby home,” Shecara said. “One-hundred and sixty-five days is such a long time to spend in a hospital, and it was our first pregnancy.”

    So it was special indeed to see her little survivor return to Riley to donate books in his brother’s name.

    “Carmine loves books, and that’s how we got through those long days in the NICU,” she said.

    Carmine smiles and holds up a book

    It can feel very lonely in the hospital, she said, despite being surrounded by nurses and doctors and other parents. For her, books were a way to connect with her baby, and she hopes they provide that same comfort to other families.

    Together, she and Thomas created a wish list on Amazon with 25 of Carmine’s favorite books, letting people know how to donate. Their goal in 2020 was 500 books. They ended up with 1,500, all of which went to Riley.

    This year, they collected just over 2,000 books, including copies of Shecara’s recently published books and other popular titles like “I Love You to the Moon and Back,” “ABCs of Kindness,” “The Gruffalo,” “Dream Big, Little One” and “Chicka Chicka Boom Boom.” They delivered half of those to the Riley Cheer Guild in December for distribution to patients. The other books went to another Indianapolis hospital.

    Riley Cheer Guild Director Ann Hannan said the gift of books is a blessing for parents and patients.

    “Children’s picture books designed for infants and young children are a multisensory family bonding experience in the hospital,” Hannan said. “When parents can’t hold their fragile infant, they can still read these stories, make up stories of their own about the pictures, and use their voice to connect with their child.”

    Some parents even make recordings of themselves reading books and singing to leave at the bedside to soothe their child when they can’t be with them. And when Riley parents donate books, they are guided by a unique insight into what families might need during their hospital stay, Hannan added.

    “In addition, the gift of books allows this special experience to continue once the family goes home.”

    Today, Carmine is off his trach and vent, though he is still dealing with some developmental delays, his mom said. He continues physical therapy, as well as therapy for feeding and speech, and he sees several Riley physicians, including Dr. A.I. Cristea in pulmonology and Dr. Carolyn Lytle in development pediatrics.

    “All things considered, he’s doing really well. He’s always happy.”

    Reives family photo

    In the past four years, Carmine has become a big brother – twice. He has a 3-year-old brother and a baby sister who is 21 months old.

    Find both of Shecara’s books on Amazon, or visit www.rooksbooks.org.

    ]]>
    https://www.rileychildrens.org/connections/fire-destroys-nurses-home-yet-reveals-his-good-heart Fire destroys nurse’s home, yet reveals his good heart 2022-01-13T14:22:00-05:00 2022-04-04T13:49:13-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Jake Harmon is a giver. He gives his time and his heart to his friends, his family and especially his patients on the fifth floor at Riley Hospital for Children.

    For 12 years, he has given his best as a nurse on the stem cell unit at Riley, a place filled with stories of hope and healing, but also anguish and loss.

    So when a fire forced him to flee his Indianapolis home late on the night of Dec. 12, he did what he always does. He went to work the next day.

    But not before pushing his car out of the garage as the roof threatened to collapse.

    “He didn’t miss a single shift. He came to work with his hands blistered after pushing hot metal,” said Darby Burns, dayshift coordinator on the stem cell unit. “He knew he needed his car to get to work.”

    The first call he made the day after the fire was to his manager, Lynn Lawson, who has continued, with help from Burns, to offer and organize the support of the cancer center staff, he said.

    HIS WORK FAMILY

    Harmon doesn’t think he deserves any special attention, so we are turning the spotlight on his Riley co-workers, the people he considers his family in Indianapolis. The people who have wrapped their arms around their colleague, their friend, to help him through a tough time.

    Harmon's team smiles

    Those same people, however, can’t talk about the fire without gushing about Harmon – his work ethic, his positivity, his humility.

    “He’s an awesome nurse. He legitimately has won every nurse award at Riley,” Burns said. That includes the prestigious Margaret Martin Award last year, named for a pioneer in patient and family care at Riley.

    Burns goes on: “Incredible guy, selfless, dedicated. And always our go-to when we need any coaching or precepting for new hires. There’s no end to the good things I can say about Jake. I feel fortunate to get to work with him.”

    When news of the fire spread, Harmon’s co-workers rallied to help – offering him a place to stay, bringing him meals, helping him pick through the remains of his single-family home on Indy’s northeastside. Burns went a step further – setting up a GoFundMe to help Harmon financially.

    He is a little embarrassed about the attention, telling his friends that he is lucky because things could have been worse.

    Not many people would react that way in this situation, Burns said, pointing out that he is a pediatric nurse working overtime in a pandemic and he just lost his house.

    LEARNING TO ACCEPT HELP

    “People are going to want to help you, Jake, and you’ve got to just suck it up and let them help you,” she told him.

    That includes people like Angel Gaskins, a nurse on the unit for 21 years, the past 12 with Harmon.

    Gaskins and Harmon

    “He is a very humble person,” Gaskins said. “He doesn’t realize the things he is doing that make such a difference. Even in the tragedy that has occurred for him, he still just thinks, ‘Oh, I’m doing what I’m supposed to be doing, coming to work every day, doing the best I can.’”

    There’s nothing special about it, he insists. His friends beg to differ.

    “Even if behind the scenes he might be struggling, he handles it with grace at work. He’s a good co-worker and one of my best friends,” Gaskins said. “We’ve all gathered around him to make sure he has what he needs. We would do the same for any of us.”

    For Harmon, who is single and has owned his home for about five years, all the attention is enough to make him blush, but it symbolizes why he considers Riley his family.

    Work, he said, is a refuge of sorts from the destruction of the fire (which remains under investigation). It’s there where co-workers bring him meals and make sure he has the coffee that powers him.

    “I have had multiple nurses on my unit bring me food and coffee,” he said. “Almost each night I work I have a meal brought for me to warm up; a few nurses even did meal prepping for me, bringing me days of meals to keep in the refrigerator.”

    “UNIT BARISTA”

    One of the kind gestures involved the team pitching in to replace his espresso machine on Christmas Eve, he said.

    “I am the ‘unit barista,’ and often I supply coffee on pitch-in nights for my co-workers. One of the simple pleasures in my life is a daily (or more) iced coffee, so the loss of my machine symbolized the loss of ‘normal life’ for me,” Harmon said.

    With his home about 75% destroyed due to the fire, smoke and water damage, Harmon faces a challenge in getting in habitable again, but he’s not doing that alone either.

    Fellow nurses and others have brought in tools he can use and volunteered family members to help with cleanup, demolition and rebuilding.

    “Support has come from far and wide as I receive texts daily from staff members from throughout the hospital with words of encouragement and offers of a place to stay or to lend a hand,” Harmon said.

    SPECIAL BOND

    He remains grateful and determined.

    “I moved to Indianapolis from northern Indiana 12 years ago this month to work at Riley. My family does not have the resources to help me. I’m kind of on my own.”

    Turns out, he’s not on his own at all.

    “Our co-workers are more like our family,” said Gaskins, who is one of several longtime cancer center nurses pictured pre-pandemic on the steps of Simon Family Tower with Harmon.

    “I would give my left kidney to him if he needed it,” she added. “He doesn’t want to ask for help, but we know he needs it. Being able to accept that help, I think, will help him grow.”

    Harmon, Gaskins and nurses throughout Riley and hospitals everywhere are working long, difficult hours amid the latest Covid surge.

    “We see a lot of stuff together that we shouldn’t see, so we have a special bond,” she said.

    Coming together to help a colleague in need isn’t new. It’s just what they do.

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    https://www.rileychildrens.org/connections/birthday-girl-celebrates-with-a-shot-in-the-arm ‘I just want Covid to be over. I want it to be like the olden days.” 2022-01-13T08:17:00-05:00 2022-04-04T13:28:14-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    A shot in the arm may not be the first thing you think of when it comes to celebrating a little girl’s fifth birthday. But for June Jones, it was a party indeed.

    June, the daughter of the Rev. Heath and Kelly Jones of Indianapolis, stood in line at The Children’s Museum last Thursday, excited to be getting her first Covid vaccine on the first day she became eligible for the shot.

    June wears a mask in preparation for her Covid-19 Vaccine

    The free clinic for adults and kids, a partnership between the museum and Riley Hospital for Children, attracted approximately 300 people for the Covid vaccine and another 100 for the flu shot.

    Clad in a red party dress, “Junebug” told everyone within ear shot that it was her birthday.

    While some might have thought it was an odd way to celebrate, the preschooler was eager to join her older sister and her parents in being protected against the coronavirus that has ravaged the United States, killing more than 800,000 in this country since it was first identified in early 2020.

    Vaccines rolled out to adults almost a year later, and in November 2021, the FDA and CDC approved a lower dose of the Pfizer vaccine for use in children ages 5-11.

    To be fair, this wasn’t how June had planned to celebrate her birthday. She was looking forward to a party play date in the park, but when several of her friends had to isolate due to Covid exposure, the family had to pivot once again.

    “We had to tell her we’re probably going to have to switch to a virtual party,” Kelly Jones said. “She got a little weepy and said, ‘I just want Covid to be over. I want it to be like the olden days.’ ”

    The “olden days” would be two years ago, when June was celebrating her third birthday. It was a simpler time when she could play with her friends and eat inside restaurants with her family.

    When Kelly heard about the vaccine clinic at the museum last week and that it was happening on her daughter’s birthday, she and her husband picked June up from school and told her they were going to the museum, where she could play, “and they have your vaccine.”

    “She was excited,” Kelly said. “She’s been wanting to get it and understands how it will keep her safe and help keep others around her safe.”

    But she is still just a kid. And shots are not her favorite thing.

    “She’s a loud one when getting a shot,” Kelly laughed.

    Sure enough, June shed a few tears but bounced right back when she saw the stuffed bear and new face mask she and other kids received. For her, they were like birthday presents, and she knew that afterward she would get to play in the museum.

    June clutches a teddy bear and smiles

    The next day, Kelly said June woke up with no ill effects, not even a sore arm, and scooted off to preschool.

    Asked why she thought it so important to have her children vaccinated, Kelly acknowledged that her advocacy for the vaccine has caused tension among some in her circle. But she and her husband, who leads a church with a majority older membership, believe it is the right thing to do.

    “From the beginning of this, he’s been working to keep his congregation safe,” she said.

    “We know what this virus is doing to the unvaccinated. We know people who have lost family members. And we know the importance of teaching the science behind it and teaching our kids what it means to stay healthy and protect others.”

    Not just from Covid, but from flu too, she said.

    “I didn’t start getting the flu shot until I was pregnant – my doctor told me I really needed to get the flu shot. We’ve seen the gravity in those at higher risk during flu season,” she said.

    “We had no idea who we could have been causing harm to by not getting our flu shot. So, it’s an awareness of how we protect others and protect ourselves.”

    Like other hospitals, Riley has been hit hard by the pandemic – both in increasing patient numbers and staff becoming ill or having to quarantine.

    The Indiana National Guard deployed a team to assist at Riley late last week, the 13th IU Health hospital to receive such support. In addition, a large team from the U.S. Navy is helping to support staff at IU Health Methodist Hospital.

    “It’s an all-hands-on-deck approach right now,” said Liz Linden, chief nursing officer for the IU Health Academic Health Center, during a phone call with media last week.

    Go to OurShot.IN.gov to make an appointment for a vaccine.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/she-never-loses-sight-of-her-purpose “She never loses sight of her purpose” 2022-01-11T09:40:00-05:00 2022-03-30T11:05:58-04:00 By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

    Constance Buran doesn’t mince words. She is direct, outspoken and fiercely protective of her kids – whether they are part of her Riley family, her at-home family or her community family.

    Buran is wrapping up a healthcare career that has spanned more than four decades, multiple states and a variety of positions.

    Her most recent role, director of ambulatory care for Riley outpatient services, is coming to an end this week. But it marks the beginning of a new chapter, one in which she devotes even more time to children in need in her volunteer work.

    Buran receiving a Riley portrait

    “I’ve had the good fortune of working in a lot of children’s hospitals in a lot of places, and children’s hospitals are very different than adult hospitals with pediatric units,” Buran said. “Our mindset is different, our culture is different, the drive is different in terms of what feeds you and motivates you.”

    What motivates her has always been kids. She and her husband, Mike, former longtime ICU physician at IU Health Methodist Hospital, have four children, two “extra” kids (sons-in-law) and four grandchildren.

    She met Mike the summer before their freshman year of high school in Cleveland, and they’ve been together ever since, bonding over their shared love of medicine and marrying after college. Last month, they celebrated their 45th wedding anniversary.

    There were multiple moves in their careers, but Buran started out as a bedside nurse in the NICU at a hospital in Cleveland. Now an advanced practice provider with clinical specialties in obstetrics and pediatrics, as well as a PhD, she worked as director of curriculum for the School of Nursing at the University of Indianapolis, before joining the team at Riley Hospital for Children 28 years ago.

    Buran in the office at Riley Hospital for Children

    “When I came to Riley, my first job here was managing the cerebral palsy program and spina bifida program,” she said. “My clinical specialty is children with multiple handicaps.”

    As a full-time clinician, she ran her inpatient and outpatient program, then moved into a managerial role for the clinic that housed those programs in addition to others.

    When she and Cyndi Bishop were tapped as directors for outpatient care, they thought at first they would continue their clinical practice. Six months in, Buran decided she wasn’t doing either job well, so she stepped away from the clinical side of medicine and put her heart and soul into the administrative side.

    It wasn’t easy, especially when she would see her former patients and their parents in the hallways or the cafeteria, but it worked out for the best, she said.

    She and Bishop have been colleagues and friends for 28 years and were part of the team that designed the Riley Outpatient Center, which opened in 2000.

    “There has been no better example of living our IU Health values than Connie,” Bishop said. “She never loses sight of her purpose, which is taking excellent care of patients. She approaches that work with passion and compassion every day.”

    Buran is an “amazing team player” who has touched many lives and truly made a difference for children and families, Bishop added.

    For Buran, that’s what it’s all about – caring for children and families – whether directly or indirectly.

    “It’s a mutual love fest,” she laughs, adding that she found a new passion in elevating the nurses who report to her to the next level.

    “Pushing them to push themselves,” she said. “I just love that work. It’s like being a very proud mother.”

    Her pride shines through.

    “My nurses and other managers are just an unbelievably talented group,” she said, dismissing the idea that her retirement leaves a void too big to fill within the organization.

    “I’m not that important. There are 36,000 employees at IU Health. I’m just one. If I haven’t brought this team to the level where they can carry on without me, then I shouldn’t have had this job.”

    And she hasn’t done it alone.

    “I am not able to do any of what I do without the support of EVS and facilities and education and the physicians and the dietitians and the pharmacists and so many others. It’s the one vision that we all have that it’s all about the kids and the families,” she said.

    And when things don’t go well?

    “You go in your office and close your door and have a moment. Then you open the door and you resume.”

    Buran jokes that together, she and Bishop have been able to “ROC” outpatient care at Riley.

    And while she has loved her work at Riley, it is not always a happy place.

    “Do not confuse Riley with Disney World. These children are sick; they don’t want to be here. There’s not a parent in this building who wants to be here,” Buran said.

    “They’re grateful to be here to get the care they need, but nobody wants to have a premature baby, nobody wants to have a baby that needs a heart transplant,” she added. “It’s our job to take those circumstances and make this the best possible experience for them.”

    Buran with her husband volunteering

    In retirement, Buran is looking forward to spending more time with her husband, children and grandsons, and she will continue her work as a guardian ad litem in Hamilton County, a volunteer role that allows her to combine her huge heart for kids with her knowledge of the medical field.

    “As an adoptive mom and nurse, I’m a sucker for these kids. I know these kids. I can communicate with them.”

    It’s only right, she said, that she helps them.

    As she wraps up her work at Riley, Buran reflects on a career that has been a blessing, from her days as a bedside nurse to her years developing other nurses to be the best they can be.

    “It’s been a great ride. This is truly a great place to work, and being a nurse is truly the best profession on the planet.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/my-legs-just-wouldnt-go “My legs just wouldn’t go” 2022-01-06T17:11:00-05:00 2022-04-11T14:28:04-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    It was at a cross-country meet last August when Jeff and Nikki Goedeker first realized something was definitely wrong with their son, Brady.

    Up until then, they explained away his fatigue, his nagging joint pain and the fact that he couldn’t sprint after the ball during baseball practice as well as he had before.

    Brady Goedeker

    The Whiteland seventh-grader is a multi-sport athlete, so aches and pains come with the territory.

    Maybe new cleats would help. Maybe a knee brace. Or a heating pad.

    As a parent, it’s hard to know when to sound the alarm, Nikki said. “I didn’t know if I should be taking him to the doctor and saying, ‘My son is tired.’ We chalked it up to growth for a while.”

    But that August day, during Brady’s first cross-country meet of the season, they watched as their son, previously a top runner on the team, could barely finish the race.

    He wasn’t fatigued or out of breath, he said afterward.

    “My legs just wouldn’t go,” he told his parents.

    Jeff said his son’s time for that race was five minutes slower than it had been the previous season.

    LOOKING FOR ANSWERS

    They took Brady to his pediatrician, who ran some blood tests. They went to an orthopedist for a closer look at his bones. A referral to a neurologist in sports medicine was next, but they were still waiting to get an appointment.

    The whole process was taking too much time. Meanwhile, Brady, who has three younger sisters, was beginning to walk awkwardly. He was having trouble climbing steps.

    When Jeff and Nikki returned from a weekend trip on Sept. 20, she noticed immediately that her son didn’t look good. He told her his toes were tingling.

    She took him directly to the emergency department at Riley Hospital for Children, where he was seen quickly by emergency physicians and Dr. Christopher Jackman, a Riley neurologist. He had an MRI that night, which showed nerve inflammation and was admitted. The following day he had a spinal tap.

    Everything pointed to Guillain-Barre Syndrome, a rare autoimmune disorder in which a person’s own immune system attacks the nerves, causing muscle weakness and sometimes paralysis. Symptoms can last for weeks to years. While most people recover, some have permanent nerve damage.

    Nikki had never heard of GBS. “It was a shock to me.”

    Brady Goedeker

    What was surprising to the doctors was that the disorder seemed to have come on slowly, based on the symptoms Brady had experienced over the previous several months. Typically, GBS comes on quickly, often in the wake of an infection or virus.

    “Brady’s presentation was interesting,” Dr. Jackman recalled. “In the short term, he had problems with leg weakness, with numbness, tingling and falling, to the point where it was very dramatic over the course of a few weeks,” he said.

    “But in looking back, his parents noticed as far back as last spring that his running had started to go downhill, he was more clumsy, and he was losing weight.”

    So in the back of their minds, doctors knew it could be a more chronic form of Guillain-Barre, but there is no test to prove that with any certainty. Their hope was that Brady would improve rapidly after treatment, which includes intravenous immunoglobulin (IVIG) infusions containing healthy antibodies. The 13-year-old began receiving the treatment almost immediately.

    ANOTHER SETBACK

    Brady remained at Riley for five days, before going home to continue his recovery, which included physical therapy. Headaches caused by a spinal fluid leak sent him back to the hospital a few days later, but then he was home again quickly.

    “We assumed he would get better,” Nikki said. “But he looked weak.”

    In mid-October, the family took a trip to Florida over fall break, and Brady became so weak he needed to use a wheelchair at the park they visited.

    “Watching your healthy kid deteriorate, it’s been a hard few months,” Jeff said.

    They took him right back to Riley when they returned, and it was at that point that doctors determined he had relapsed, which pointed to the chronic form of GBS – CIDP (chronic inflammatory demyelinating polyneuropathy).

    “It was probably simmering for months,” Dr. Jackman said, based on the history Brady’s parents shared. “Either it accelerated, or he kept steadily declining to the point where he couldn’t compensate anymore. He’s a tough kid, and I imagine he stuck it out for a long time.”

    His parents getting him to Riley when they did was the right move, the neurologist said. Guillain-Barre itself is rare, but the chronic form is rarer still, Dr. Jackman said, and the cause is a mystery.

    “There’s not anywhere else in the state that sees this with any more frequency than Riley, and even we don’t see it a lot. We probably see one to two new cases a year at most.”

    SWAPPING SPORTS FOR THERAPY

    For now, Brady continues to receive infused donated antibodies via IVIG in the hope that it slowly resets the immune system so that it stops attacking his nerves. In addition, he has physical therapy at Riley’s East Washington Street clinic.

    He fills the time he used to spend on the track or baseball diamond or basketball court with daily exercises, stretching and therapy to strengthen his muscles and improve mobility.

    The disease mostly attacked his ankles, causing extensive nerve damage primarily in the right ankle, so he has been working with Riley physical therapist Sarah Kuklish to improve his strength and flexibility.

    Brady Goedeker

    For Christmas, Brady received an exercise bike, and he has been using it every day, his mom said, building up his endurance until he can run again.

    “His balance and strength are slowly starting to come back. He just started feeling some tingling in his right ankle, which is a sign of nerve regeneration,” she said.

    Brady also received orthotics before Christmas, which help him walk a little better, Nikki said, and the most recent MRI showed less inflammation in his spine than was visible in October.

    “One day at a time,” she said, “but the little signs of progress have been great.”

    Brady Goedeker

    Meanwhile, Brady has turned his attention to a magic set he received a few years ago, brushing up on skills via YouTube.

    “He has quite a few card tricks up his sleeve,” his mom laughed.

    “I like fooling people,” Brady said, while undergoing one of his IVIG treatments in the Riley Outpatient Center in December.

    “REMARKABLY STRONG”

    He’s disappointed that he couldn’t try out for his school’s basketball team this winter, but his parents say he continues to display a positive attitude, and they are hopeful that he might be able to participate in track and/or baseball this year.

    “He works really hard at physical therapy, and even though this could be a long, slow process of healing, we’ll get through it and he’ll get better,” Nikki said.

    “He is remarkably strong,” Jeff said of his son, “much stronger than I think I would be. It’s heartbreaking as a parent because we don’t really know how long he’s been dealing with these limitations.”

    They are grateful for the collaborative care Brady has received at Riley, noting that within the first 24 hours of his arrival, they had a tentative diagnosis and a game plan.

    Several years ago, Brady cut his ear on a diving board, and his parents first took him to another hospital that did not specialize in pediatrics. A friend encouraged them to get him to Riley for plastic surgery.

    “They blew our socks off,” Jeff said of Riley. “I was so impressed with the care he got there that time, we said if anything else happens to one of our kids, we’re going to Riley. What they are doing there is what medicine is supposed to be about – working together to find solutions to complicated problems.”

    DRIVE TO GET BETTER

    The plan now is to continue Brady’s IVIG infusions every two weeks, eventually spacing them out to every three or four weeks, assuming his condition doesn’t worsen, Dr. Jackman said.

    Brady Goedeker

    As for the prognosis, it’s too soon to tell. Some patients have a complete recovery, others require occasional treatment, and still others live with a more chronic form of the disease.

    But Brady has a lot going for him, starting with his family support and his mindset as an athlete, Dr. Jackman said.

    “So much of rehab is just your personal resilience and your effort and drive to get better,” he said.

    Brady has that in spades.

    While his journey to recovery isn’t over yet, his parents agreed to share his story as a way to encourage others.

    “Once you get all better, bud,” Jeff has told his son, “you’re going to have quite a story to tell. Hopefully, you can help others.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/we-are-entering-our-third-year-of-this-and-its-wearing-us-down “We are entering our third year of this, and it’s wearing us down” 2022-01-04T17:33:00-05:00 2022-01-04T18:34:08-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    For Dr. Samina Bhumbra, the Covid pandemic often feels like the movie “Groundhog Day.” It’s as if she is living the same day over and over again.

    “There have been very few moments since March of 2020 that we’ve been able to catch a breath or catch a break,” she said last week after a full day of treating patients with a variety of infectious diseases. “There’s always been a new obstacle that’s been presented to us.”

    The “us” she is speaking of is the healthcare community, but it extends to society at large, of course.

    As associate medical director for infection prevention at Riley Hospital for Children, Dr. Bhumbra was thrust into the front lines of the fight against Covid straight out of her fellowship in the summer of 2020.

    But December marked the toughest month at Riley since the pandemic began nearly two years ago.

    “We’ve admitted at least 70 patients with Covid this month,” she said on Dec. 29. “And of those, 40 percent needed ICU care.”

    As of this afternoon (Jan. 4), Riley was caring for 32 Covid-positive patients in the hospital, according to Dr. Elaine Cox, chief medical officer for Riley. Of those, nine are new moms in the maternity center and 11 are children in the pediatric intensive care unit – seven of whom are on ventilators.

    “We have about four times as many children admitted as we’ve had in any other wave (of the pandemic),” Dr. Cox said. “And acuity is worse. More than half are spending time in the ICU and 40 percent of those are on ventilators.”

    What’s tragic, Dr. Bhumbra said, is that the vast majority of the children admitted were eligible for the vaccine but had not received it.

    “It’s easier to count the kids who are vaccinated vs. the ones who aren’t,” she said. “And these kids in the ICU aren’t there for just a day or two. They’re sick and they need a lot of help.”

    HOPING FOR HEALING

    Shawn O’Connor is praying that her 10-year-old son Maddox does not need to be admitted to Riley, but he tested positive for Covid over the weekend, just days before he was set to be vaccinated, and for now is being treated at home.

    Maddox, who is known around Indianapolis for his outreach work with the homeless community, suffers from mitochondrial disease, which saps his strength and weakens his immune system.

    O’Connor has a message for other parents out there: “The debate over vaccines is a hot topic, I know, but vaccines aren’t political. They are public safety,” she said. “It’s not about taking away our freedoms, it’s about protecting our neighbors.”

    Those who choose not to get vaccinated or who go out in public knowing they are sick are playing Russian roulette with the life of her son and others like him, she said.

    O’Connor, who is caring for her son at home while he is being closely monitored by Riley physicians via phone and other electronic means, said she gets up every three hours to give medication to control his fever, he is on continuous fluids, and he is using a BiPap machine to keep his lungs open.

    “His doctors have been amazing,” she said Sunday night. “Dr. (Theodore) Wilson is on call for metabolism and he called us every four hours through the night and into the morning. Cardiology called … checking on him.”

    STRAIN ON HEALTHCARE

    “I wish people could see how much of a strain this is putting on our healthcare system,” O’Connor added. “These doctors are being forced to treat kids at home and still take care of all the kids in the hospital. Riley has literally been a godsend.”

    As the patient census hits capacity at Riley and more team members are hit with the virus, a six-person team from the Indiana National Guard is deploying to the hospital this week.

    Two clinicians and four nonclinical workers will assist wherever and however they can, according to Dr. Cox. This will be the 13th IU Health hospital to receive support from the National Guard. In addition, a 20-person team from the U.S. Navy is working alongside staff at IU Health Methodist Hospital.

    “It’s an all-hands-on-deck approach right now,” said Liz Linden, chief nursing officer for the IU Health Academic Health Center.

    Riley leaders have asked that parents not take their children to the Riley emergency department to be tested for Covid. A trip to an urgent care center or their pediatrician should be faster and will free up Riley staff to care for emergencies in the ED.

    O’Connor planned to have her son vaccinated in November, when a lower dose of the Pfizer vaccine was approved for use in kids 5-11. But he had major emergency surgery that month, which threw off her timetable. He was later cleared to receive the vaccine and was scheduled to get his first dose this week, before he got sick.

    This afternoon, O’Connor said Maddox is still at home, holding his own. His fever comes and goes, and his blood-oxygen level is improving, now holding steady in the mid-90s during the day. She is hopeful that he can receive a monoclonal antibody infusion Wednesday.

    “So he’s thankfully getting medical attention, just not the conventional way,” she said.

    Dr. Michele Saysana, chief quality and safety officer for IU Health and a hospitalist at Riley, cautions that while there have been advances in treatments for Covid over the past 22 months, some are losing their effectiveness and supply is limited for others.

    “There is by far more vaccine available than there will be treatment for Covid,” she said.

    BY THE NUMBERS

    As of mid-December, only about 20 percent of children in the U.S. ages 5-11 had received their first Covid shot; 14.7% were fully vaccinated. Among those 12-17, 53.4% were fully vaccinated. In Indiana, just over half of the eligible population from age 5 through adult has been vaccinated.

    Dr. Bhumbra continues to preach the value of vaccines to the families she encounters in clinic and on inpatient rounds.

    “The hardest thing of all this is just knowing we have the means – with the vaccine, with masking, with handwashing combined – to help prevent a lot of the things we’re experiencing now,” she said.

    “I just wish folks out there would understand that even though they may be healthy, or their family member fortunately didn’t get really sick from Covid, it may infect others around them and be far worse.”

    It takes a physical and mental toll on the healthcare workers who are faced with surge after surge of Covid patients, the same healthcare heroes the public saluted in the early days of the pandemic.

    For Dr. Bhumbra, it’s disheartening, but she continues to approach each vaccine-hesitant caregiver with compassion and patience.

    “The common reason we hear from families who haven’t been vaccinated is that they want to see more research. We are in our world of medicine and we see one thing, but it’s not necessarily congruent with what people see who aren’t in medicine,” she said. “Trying to bridge that gap is really difficult.”

    So she listens to their concerns and addresses them as best she can, reassuring parents that the vaccine is safe and effective.

    “I try to share the knowledge so they can spread the knowledge. But it’s tough,” she said. “We are entering our third year of this, and it’s wearing us down.”

    VACCINE CLINIC AT MUSEUM

    Riley is partnering with The Children’s Museum of Indianapolis this Thursday on another free vaccine clinic for children ages 5 and older, as well as adults. Booster shots and flu shots also will be offered.

    The first clinic at the museum attracted hundreds of families, and Dr. Bhumbra hopes for a similar turnout this Thursday. The vaccine clinic, which runs from 4 to 8 p.m., is open to the public, and pre-registration is not required. The museum is located at 3000 N. Meridian St.

    File photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/riley-cardiologist-this-is-exactly-where-i-am-supposed-to-be Riley cardiologist: “This is exactly where I am supposed to be” 2021-12-28T14:32:00-05:00 2022-04-11T10:10:19-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    As a little girl, Megan Wilde used to love to go on hospital rounds with her physician father. She dreamed of the day when she would be the one wearing the stethoscope and examining patients.

    Many years of schooling later, she is doing just that as Dr. Megan Wilde, a pediatric cardiologist at Riley Hospital for Children at IU Health.

    While she did her residency in internal medicine and pediatrics at the University of Michigan, she had long been fascinated by congenital heart disease. So, she did a cardiology fellowship, followed by a fourth-year fellowship in heart failure and transplant at C.S. Mott Children’s Hospital in Ann Arbor, Mich.

    After eight years in Michigan, the Utah native landed in Indianapolis to join the faculty of IU School of Medicine, specializing in the management of heart failure and transplantation at Riley Hospital.

    Here, she has found a supportive group of colleagues, coupled with the kind of challenging workload that inspires her to keep learning and growing.

    “I FELL IN LOVE WITH TRANSPLANT”

    “I find congenital heart disease really fascinating and something I intrinsically feel like I have to work hard at every day,” she said. “I like that it challenges me. I wanted a job that really made me work and think. That’s how you stay engaged and continue to ask yourself questions.”

    Patients with congenital heart disease are living longer these days, and she appreciates the opportunity to follow her pediatric patients into adulthood.

    Megan Wilde conversing

    “Inherently, I was interested in doing pediatric cardiology, where I could take care of people from childhood into later life. And ultimately, when I was looking at the subspecialties within cardiology, I fell in love with transplant,” Dr. Wilde said.

    “There is something so amazing about supporting a family and a patient to a point where there are not a lot of medical options left, but here is an amazing, lifesaving opportunity,” she said about the miracle of transplant. “Managing heart failure is like the coalescing of all of my training in one specialty.”

    Dr. Wilde, who joined Riley in August of this year, said her first impressions of a supportive and collaborative culture within the hospital and the cardiology department have been borne out every day since she arrived.

    “For me, Riley offers the combination of a stellar pediatric program – taking amazing care of children – and an extremely supportive department. As a young academic faculty member, that’s important to me.”

    She describes the people she works with as warm and helpful as she navigates a new system and tries to figure out how she fits into the group.

    But she knows one thing: “This is exactly where I am supposed to be. I came here so I could become the best doctor I could be, but I feel like I also found a family within medicine to some extent.”

    Dr. Wilde prides herself on her willingness to listen and learn from her patients and their families.

    LEARNING AND GROWING

    “I learn something new from every patient because every patient has a story to tell,” she said. “Whether that is a description of a symptom in a new way or a new symptom I have never heard of, I need to stop and think about it and determine if it is connected to the heart.”

    It’s her slow, deliberate approach that endeared her to Janet Mann, whose daughter Emma arrived at Riley after collapsing during a cross-country sectional competition in October.

    “She is so generous with her time and explanations,” Mann said of the physician who examined her daughter. “She is thoughtful and always takes time. Time is what people need sometimes. Just time to talk it through and feel confident the path is right. To know someone is looking at every angle.”

    Dr. Wilde continues to care for 17-year-old Emma while they isolate the cause of the irregular heart rhythm that led to the high school runner’s collapse.

    “I really like to talk to my patients, and sometimes I have to remind myself in clinic that my time is up and I have other patients waiting,” she said with a laugh.

    “At the end of a conversation, they might say something and that is the hint I needed to help me figure out what I need to look for. When you let the person tell their story, that’s when you hear it.”

    Off the job, Dr. Wilde loves to explore farmers markets, hang out with friends, travel and go to the movies.

    The pandemic limited all of these pastimes, so she turned to another love – reading. In time, she will head back into the theater, and she doesn’t even particularly care if the film is good or bad, she said.

    It’s about the experience. And the popcorn.

    “I just like the escape of it. Now, I look at the theaters every weekend and think maybe today is the day.”

    One more place she likes to escape is the ski slopes of Utah, where she grew up. The pandemic prevented her from traveling home to see her family, including her parents, two siblings and several nieces and nephews, but this Christmas, that was her gift to herself – home for the holidays.

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/special-delivery-just-in-time-for-christmas Special delivery just in time for Christmas 2021-12-22T08:07:00-05:00 2022-03-25T10:13:21-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Sofia Ann Raffaelli is the best gift her parents could ask for this Christmas.

    Sofia is 3 months old, but she went home for the first time Monday, following a 94-day stay at Riley Hospital for Children.

    Dressed in her holiday finest, the 9-pound baby girl is the perfect package to put under the family Christmas tree. Not even Santa Claus could do better.

    Kaitlin, Dante, and Sofia in the hospital

    Kaitlin Moore and Dante Raffaelli have longed for this day ever since Sofia was born via emergency C-section in mid-September, six weeks before her due date.

    Although, to be fair, Moore didn’t even know she had delivered a baby girl until three weeks after the birth. That’s because Moore had been hospitalized with a severe case of COVID-19.

    She had been LifeLined from a Hancock County hospital to IU Health Methodist Hospital, where she had been unconscious since Sept. 17, the day she gave birth.

    COVID CHANGED EVERYTHING

    An emergency C-section was definitely not in her plans. But COVID changed everything for the unvaccinated mother of two older kids, ages 2 and 7.

    “They told me I was going to have general anesthesia and took me immediately to the operating room,” Moore said. “I remember counting backward, and that was it, until 19 days later.”

    Both of her lungs collapsed during surgery, she said. Raffaelli, who also had COVID, could not be with her during the birth and could not see their daughter until a week later.

    When she was extubated, nurses asked her what month it was, and she replied September. Actually, it was well into October by then. Those days were lost. She remembers nothing from the time she was on a ventilator, other than some “weird dreams,” she said.

    What she does remember is finding out from her mom that she had delivered a beautiful 4-pound girl 19 days earlier and the baby was in the NICU at Riley.

    “At first, I didn’t even know if she was alive,” said Moore, who had been transferred from the labor and delivery unit at Methodist to the ICU, then the pulmonary floor. “I was looking around the room, and there was no baby.”

    Moore’s mother was able to fill in the blanks, showing her a picture of her baby girl.

    “I obsessed over her for six days and kept showing everyone who came in my room the pictures of her,” Moore said.

    MOM MEETS DAUGHTER

    On the 25th day, she was finally strong enough to be taken over to Riley, where she got to meet and hold Sofia Ann for the first time.

    “She was so tiny, but I was so happy to see her. I don’t think there was a dry eye around me, including the nurses.”

    Moore holding her baby

    The two hours she got to spend with her daughter went by in a flash, Moore said, but she would return again and again, first in a wheelchair, then a walker, then on her own two feet, until she could be with Sofia at Riley for the long haul.

    Raffaelli had named their baby while Moore was on a ventilator. It was one of several names the couple had discussed, but he was nervous about how she would react.

    To look at the family now, it’s clear he needn’t have worried. Sofia’s name fits her perfectly, Moore says as she snuggles with her daughter and watches her fiancé prepare Sofia’s feed.

    “He did good,” she says about Raffaelli’s decision. “He and my mom took turns doing hospital rotations and watching our two boys. They are the rock stars of the story, really.”

    She also gives a shout out to Dr. Anna Thomas, a neonatologist who was on hand for Sofia’s delivery at Methodist and cared for her in the NICU at Riley, where she spent 81 days before “graduating” to the pulmonary floor.

    NURSES ARE CLOSE TO HER HEART

    Moving out of the NICU was a positive step, but it was bittersweet for Moore, who had grown attached to the team who cared for her daughter daily.

    “We have had the absolute best care for not only our child, but for ourselves as well,” she said in a Facebook post the day Sofia was moved out of the NICU. “We have had some of the most amazing nurses I’ve ever met in my life. They have truly become some of the closest people to my heart.”

    Her love extends beyond the nurses, too.

    “The NPs, doctors, speech therapists, respiratory therapists have all been so wonderful. The staff at the front desk, child life and NICU Nest are all amazing too. I am just completely humbled and grateful for all of the extra services they provide to parents in a time that is far from easy.”

    Kaitlin and Dante caring for Sofia

    During their two-week stay on 8 West, the couple tag-teamed their daughter’s care while they inched closer to discharge day. Each had participated in 24-hour care shifts, along with Moore’s mother, so they could feel confident taking care of Sofia at home.

    There, she will receive supplemental nutrition via a central line and a feeding tube, but she won’t require extra oxygen. Sofia was diagnosed with cystic fibrosis after birth, so it’s important that she continues to gain a healthy amount of weight to improve her lung function down the road, Moore said.

    Sofia will continue to be under the care of Riley pulmonologist Dr. Don Sanders.

    SWEET AND SOCIAL

    A few days before she was discharged, Sofia and her dad were bonding over a tiny bottle that he was coaxing her to drink. While she continues to take more nutrition by mouth, she rarely finishes a bottle, so she gets the rest of it through her feeding tube.

    “She likes to eat for a minute, and then she gets tuckered out,” her dad said.

    Moore describes her daughter as “a precious little thing, super sweet and social,” who likes nothing more than to sit in her infant seat and watch people walk by her room at Riley.

    “She smiled at me today intentionally, and it melted my heart.”

    Sofia at home in front of the Christmas tree

    Now that she’s home, she has two big brothers to keep an eye on. The older one dotes on her, while the 2-year-old is still getting used to the idea that he is no longer the baby of the house.

    Christmas will be a joyful day for the young family, thanks to support from a host of people. There will be gifts under the tree, but the best present has already arrived, complete with a Christmas bow in her hair.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/grace-will-lead-me-home “Grace will lead me home” 2021-12-20T11:08:00-05:00 2022-04-19T16:43:01-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    “Amazing grace
    How sweet the sound
    That saved a wretch like me
    I once was lost, but now I'm found
    Was blind, but now I see”

    Cody and Stephanie Smith can still hear their son sing this hymn. His sweet little voice reaching for the high notes, the words of the first verse tumbling out by memory.

    Friends and family sang this song in honor of little Charlie last week, as they laid to rest the boy with the big smile and the incredible heart.

    Charlie, 3, passed away Dec. 11 at home after a two-year fight with stage 4 neuroblastoma.

    “This morning at 9 a.m., Charlie met the King of Glory,” Cody Smith announced on his Facebook page hours after his middle son passed away. “Cancer has been defeated, and Charlie has finished his race. Praise God for his continued goodness and mercy!”

    “’Twas grace that taught my heart to fear
    And grace my fears relieved
    How precious did that grace appear
    The hour I first believed”

    The Smiths have always believed. Through the devastating diagnosis when their son was just 16 months old, through the months of treatment at Riley Hospital for Children, through the victories and the setbacks – their faith has not wavered.

    So, they gathered at a southside Indianapolis church on Friday to give thanks for Charlie’s life, recalling all the ways he brought joy and laughter into their lives and the lives of his two brothers, Henry and George; to his extended family and friends; his Riley care team; and to strangers around the country who have followed his journey on the family’s Cheering for Charlie Facebook page.

    Thousands sent prayers of support and love to the family through social media. Among them:

    “I think we all got a look into Heaven through your faith and love.”

    “There’s a new star in Heaven tonight.”

    “Your family’s journey has lifted my soul here on Earth to live a better and more faithful life.”

    “Always cheering for Charlie. Thank you for sharing his life with us.”

    “You have touched so many hearts and souls and made the world a better place by the witness of your faith.”

    “The Lord has promised good to me
    His word my hope secures
    He will my shield and portion be
    As long as life endures.”

    Charlie endured so much in his short life, but “God has been faithful and present every day,” Cody said in the eulogy he delivered for his son.

    Charlie at Riley Hospital for Children

    Whether in the friends and strangers who loved on their family, who picked them up and pushed them forward, who dropped off meals and gift cards, or who delivered special orders of Chick-fil-A to home and hospital.

    “God placed people in our lives every step of the way,” Cody said.

    Among those people were Charlie’s team on the oncology and stem cell units at Riley, a place he came to regard as home. The place where he took his first steps as a 1-year-old.

    “He grew to love Riley, the people on that floor became our family,” Cody said. “He was excited to see them every time. I’d like to thank that team for being there – you are a gift from God.”

    And Charlie was an amazing gift, his parents agree. Until he became too sick, he loved nothing more than to chase his big brother around the house or yard, playing “Star Wars” or “Power Rangers.”

    He had a gentle spirit, his dad said, forgiving and humble, joyful and kind.

    “Through many dangers, toils and snares
    I have already come
    ‘Tis grace hath brought me safe thus far
    And grace will lead me home”

    Charlie is home now, his parents believe. In a place where cancer can no longer hurt him. It may not have been what they wished for or prayed for, but they are comforted by their belief that they will see their precious boy again.

    Painted picture by Charlie of crosses

    “What a wonderful kid,” Cody said, a kid who loved to paint and listen to stories, who loved Bible time and the game Hi-Ho Cherry-O, who watched the movie “Frozen” at least 500 times, who cared for the baby pumpkins at his grandmother’s house and who never let cancer get the best of him.

    “A brilliant kid, a gifted kid, a beautiful kid. And he was our kid.”

    “When we’ve been there ten thousand years
    Bright shining as the sun
    We’ve no less days to sing God’s praise
    Than when we’d first begun.”

    Previous stories:

    Cheers for Charlie keep getting louder - Fourteen months into his treatment for neuroblastoma, a 2-year-old Franklin boy is closing in on the home stretch.

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    https://www.rileychildrens.org/connections/a-year-after-crash-teen-is-racing-again A year after crash, teen is racing again 2021-12-16T13:16:00-05:00 2022-04-11T14:28:55-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Don’t ever tell Lucas Grounds he can’t do something. He’ll move heaven and earth to prove you wrong.

    That’s evident as the 16-year-old drives up in a massive 1996 Buick Roadmaster station wagon, pulls a wheelchair frame out of the front seat, pops on the wheels, then slowly shifts himself out of the low-riding wagon into the chair. All on his own.

    Lucas Grounds

    He maneuvers the wheelchair over a rocky driveway, popping a wheelie as he rides toward the garage of a house under construction near his family’s home. This will be his house, all materials and labor donated by friends and family who believe in this young man.

    Those wheelies have backfired a couple of times – sending him tumbling backward, but he just chuckles at the memory.

    Lucas is not reckless by any means. He is smart, stubborn and determined – traits that have proven invaluable since his life was upended one year ago.

    It was Dec. 10, 2020. The seven-time national champion motocross racer had just signed a contract to go pro at 15. He was riding his dirt bike along a rural Indiana bridge when he hit a slick spot, spun out and struck a pole.

    The accident left him paralyzed from the waist down.

    FOCUSED ON RECOVERY

    One year later, Lucas is tinkering with dirt bikes, sprint cars and remote-control cars in the garage of his family’s rural Martinsville home and planning his next race.

    That’s right, Lucas is racing again. This time in a specially adapted sprint car that he operates with hand controls.

    He tells his parents that he dealt with the accident that day on the bridge, and he decided in that moment it was not going to define his life.

    Lucas Grounds

    True to his word, the high school junior has been upbeat and focused ever since – through his long recovery at Riley Hospital for Children, through intense inpatient rehab and through every obstacle in his path.

    “Look at him go,” says Justin Grounds, Lucas’ father. “I’m not gonna lie, I’m in awe of him every day.”

    Justin and Shanda Grounds were high school sweethearts who grew up racing four-wheelers. Lucas is the eldest of their four kids, and they knew at a young age that he was going to do big things.

    He tried out his first dirt bike at the age of 3 and never looked back, Shanda said. As he grew and gained experience as a racer, he also gained a team of sponsors and friends who believed in him and his talent.

    That same team, now called Magna1 Motorsports, continues to sponsor him on the sprint car circuit, now that he is back on track and competing again.

    How hard was it for his parents to support his decision to get back into racing?

    “Justin and I made the decision early on that if he was not going to let this emotionally affect him, we weren’t going to stop him from living his life,” Shanda said. “If we would have let him do it before, we’re going to let him do it now.”

    NO TIME FOR TEARS

    To hear them tell it, Lucas has not had a bad day since the accident. Shanda still remembers the fears and tears she experienced early in Lucas’ recovery. And she remembers that the therapists and nurses in Riley’s inpatient rehab unit were a lifeline.

    “I met those people in what was the worst time of my life. Something a parent never wants to experience, but the entire time we were there, he did not have one bad day. He still hasn’t,” she said. “It blows my mind, but I’m glad for it.”

    Lucas was determined from the get-go. He advanced so quickly that his physical and occupational therapists had to constantly come up with new goals for him.

    OT Whitney Kozlowski is one of his biggest fans.

    “I am so incredibly proud of Lucas’ progress since his discharge, and I must say I’m not surprised at all. His positive attitude, motivation and determination to live each day to the fullest have really set him up for success,” she said.

    Their son’s attitude notwithstanding, Shanda and Justin give the compliment right back to the Riley team.

    “The care he received in physical therapy and occupational therapy was amazing,” Shanda said, describing the environment as positive and encouraging with an emphasis on building skills.

    “They had goals for him that I believed at first were going to be very lofty,” she said.

    She soon realized that they were right to push.

    “They are there to help you learn your new normal, to help you realize this is not the end of your life, this is something different and new,” she said. “They knew he was going to be driven, and they wanted to push him as far as they could before he came home.”

    HE WANTS TO RIDE AGAIN

    Justin echoes his wife’s sentiments, describing how Lucas’ therapists were instrumental in getting their son back on the road to recovery.

    And now, he said, “Lucas gets around so well. He lives about as normal a life as one could, given his situation. There’s almost nothing he hasn’t been able to do outside of racing the dirt bike.”

    And he hasn’t given up on that dream yet.

    Someday, he says, he will ride again.

    Lucas Grounds

    He competed in his first sprint car race over the summer, about five months after he got out of the hospital. He placed third in one race and fourth in another. Not bad, you might think. But Lucas is used to winning.

    “I didn’t win, so I wasn’t as happy, but it wasn’t terrible. It was fun,” he said, “something new and exciting to do.”

    He is hoping to do better in a race this weekend.

    An excellent mechanic and welder, Lucas wants to study engineering at Purdue University. Between school and daily therapy, he stays busy, but he also picks up extra money by working on bikes for his friends and designing racing graphics.

    He proudly takes visitors on a tour of the home being built for him, thanks to the generosity of his team, headed by Chris Landers, as well as Sunco Construction and a host of subcontractors and suppliers.

    Lucas Grounds

    When the home is complete early next year, Lucas and his family will move in, but when he reaches adulthood, it will be his house, Shanda said, and they will move back to their home next door or build another on an adjacent lot.

    “It’s awesome that everyone has come together to do this for me,” Lucas said, as he showed where his bedroom and handicapped-accessible bathroom with a large shower will be.

    He has been heavily involved in the design of the home, selecting the cabinets, flooring, paint colors, etc. Eventually, a chair lift will be installed so he can access the upstairs, but everything he needs will be on the main level.

    “NOTHING HAS SLOWED ME DOWN”

    If you ask him how he has stayed so positive, even during the dark days after the accident, he just shrugs.

    “I don’t know, I still do everything I used to do,” he said. “Nothing has slowed me down.”

    He participated in a wheelchair training program called Skills on Wheels through Riley after he was discharged and plans to return next year as a peer mentor, helping other kids learn to maneuver their chairs over curbs, up ramps and around obstacles. The upbeat attitude the teen shares will be a bonus.

    “He has always loved helping people,” his mom said. “If you told him today you wanted to learn how to ride this bike, he’d teach you. When Whitney saw how fast he was progressing in a wheelchair, she looked up advanced skills. She knew it would be a great fit for him to help with Skills on Wheels and to give kids confidence. It’s been awesome to watch.”

    Lucas Grounds

    Like the proud father he is, Justin can’t help but smile when he talks about his son.

    “People in a wheelchair might think they can’t do something, but Lucas thinks, ‘I can probably do that. I might need some help, but I’ll figure it out.’”

    That’s what his therapists witnessed as well.

    “Lucas continues to inspire me to make the most of each day, just like he does,” Kozlowski said.

    Lucas may have been upbeat in the hospital, but Shanda admits to having some low moments. That’s when she would pray the hardest.

    “God really provided me with a sense of peace about Lucas, so I don’t get worked up too much.”

    She has gained perspective in the past year as well.

    “It’s bad luck that he got hurt, but he’s touched so many lives and he’s taking it so well,” she said. “I don’t know, maybe it’s a blessing?”

    She hesitates.

    “A blessing in disguise. I don’t know how to explain it.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    Previous stories:

    Teen’s spirit unbroken after accident leaves him paralyzed - #Lucas912Strong defines this 15-year-old champion dirt bike racer who is home again after treatment, rehab at Riley.

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    https://www.rileychildrens.org/connections/sepsis-survivor-gets-an-assist-from-the-indiana-pacers Sepsis survivor gets an assist from the Indiana Pacers 2021-12-14T13:31:00-05:00 2022-05-02T14:21:59-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Jonathin Perez received a delightful surprise last week – tickets to his first Indiana Pacers basketball game.

    Not just tickets for him and his parents – Evodio and Katie – but for his sister Sophia too, and his grandpa. But wait, there’s more.

    Jonathin Perez at a Pacer's game

    Jonathin, 8, got a visit from Pacers mascot Boomer during the game, a handwritten note from Pacers President Kevin Pritchard, a signed jersey and a bag full of Pacers swag, including enough T-shirts to share with his entire basketball team.

    Yes, Jonathin plays basketball too, but the game is a little different. The second-grader plays on a wheelchair basketball team.

    It’s been 3½ years since Jonathin lost his right leg after an infection led to necrotizing fasciitis (also known as flesh-eating disease), then sepsis, nearly killing the then-4-year-old.

    Doctors and nurses at Riley Hospital for Children at IU Health saved his life from the raging infection, but they could not save his leg.

    “He was on the brink of death, and we were able to pull him back from that,” said orthopedic surgeon Dr. Ryan Fitzgerald. “If he’d been here a couple of hours later, he probably would have died.”

    Despite the trauma and the long recovery, Jonathin embraces all life has to offer now. He wears a prosthetic leg to walk (and run) but uses a wheelchair when he’s on the basketball court.

    Jonathin on the Pacer's Basketball court

    Seeing his first Indiana Pacers game was a thrill for Jonathin and his sister, Sophia, who also loves the game.

    The kids’ mom, Katie Wilson-Perez, said it all came about because of the kindness of a friend whom she came to know through the Necrotizing Fasciitis community when the friend’s wife passed away as a result of the disease earlier this year.

    That friend talked to a friend, who talked to another friend who works for the Pacers.

    The result was a night to remember.

    “Words cannot express how thankful we are for the amazing opportunity that was given to our sweet boy,” Wilson-Perez said.

    “The kindness of these people means so much more than they could know, and the joy on Jonathin’s face last night was worth more to us than all of that merchandise combined.”

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    https://www.rileychildrens.org/connections/nine-year-old-superhero-has-cape-will-fly Nine-year-old superhero has cape, will fly 2021-12-12T19:12:00-05:00 2022-03-04T15:53:05-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Just call her Wonder Woman.

    Kenley Mullis breezes through the hallways of Riley Hospital for Children in her wheelchair with a red superhero cape draped over her back.

    Kenley Mullis in her wheelchair at Riley Hospital for Children

    This is a big day for 9-year-old Kenley, as she celebrates the end of chemotherapy for osteosarcoma, a type of bone cancer.

    The third-grader has vanquished cancer, with help from her super-human care team of nurses, therapists and physicians, not to mention her super-supportive family.

    Kenley has been a fan of Wonder Woman for years. She dresses the part whenever she can, but it’s more than that, says her mom, Kara.

    “Kenley is our Wonder Woman. “She’s been a fighter since day one,” Mullis said on Friday before her daughter was discharged after her last chemo treatment.

    That’s because Kenley has been a Riley baby from birth. Born nine weeks early, she spent the first few months of her life in the NICU.

    “Nothing has come easy to her,” Mullis said. “She has always had to work harder – even just the little things like being able to eat. That took a long time and lot of intervention from so many therapists and specialists.”

    But that fight, that determination is why Mullis believes her daughter is going to come out a champion.

    Mullis and her daughter

    HER LEG JUST SNAPPED

    It was last February when Kenley was diagnosed with osteosarcoma. There were no early signs, no symptoms, her mom said.

    In fact, just two days before X-rays revealed a large tumor in her right leg, she had hiked more than 2 miles in 8-inch-deep snow with her family.

    “She was not slowed down, there were no red flags,” Mullis said, noting before her illness, her daughter played softball and participated in gymnastics, so bumps and bruises were a normal part of life.

    “This is a girl who couldn’t just walk into a room. She had to dance into it or leap into it. She has always been a natural athlete.”

    Two days after that hike in the snow, Kenley and her mom were playing outside in the driveway when the snow had melted.

    They were racing back and forth to the mailbox when suddenly, Kenley collapsed. Her leg was broken.

    “Her femur, the strongest bone in her body, should not have broken,” Mullis said, “and all of the sudden we’re being sent to Riley and they’re telling me before she’s even sent upstairs from the ER that they see a tumor in her leg.”

    A TOUGH CHOICE

    The first priority was to remove the tumor.

    Mullis and her husband, Trevor, had a difficult decision to make. They could opt to have their daughter’s leg amputated, guaranteeing that the cancer was eradicated, or they could try a more unconventional approach – have the large tumor and surrounding margins removed, then install an external fixator, a metal frame that holds bones in place.

    The idea is that over time, the fixator can be adjusted to slowly lengthen her leg and realign the bone, giving her femur a chance to regenerate itself as naturally as possible.

    “We knew this path would be harder, and there’s not a roadmap for it,” Mullis said, “but it would give her the most options going forward as far as activity levels. She is a very active girl, until 10 months ago when she was forced to stop everything and sit in a chair.”

    Kenley painting at Riley Children's Hospital

    Riley orthopedic surgeon Dr. Christopher Collier, who specializes in the management of bone and soft tissue tumors, removed the tumor from her leg, while IU Health orthopedic surgeon Dr. Brian Mullis (no relation) fitted her with the fixator. Her oncologist is Dr. Michael Ferguson.

    Because of the orthopedic part of Kenley’s cancer journey, the chemo portion has taken a lot longer than normal.

    “Nothing about her journey has been typical,” her mom said.

    What should have been a five- to six-month timeline for chemo has been stretched out over 10 months because she has had several leg surgeries, and more will be needed.

    In four to six weeks, surgeons will put new pins on the fixator and start pushing and promoting that bone to fuse back together, her mom explained. The device itself likely won’t come off for at least another six months.

    ANIMAL LOVER

    The Ellettsville, Indiana, family, which also includes 14-year-old Logan and 11-year-old Lucy, has adapted as best they can to the turmoil of the past 10 months, but they are eager for a certain 9-year-old Wonder Woman to get back on her feet.

    When she considers her future, Kenley wants to be sure there are plenty of animals in it. In fact, she dreams of someday living in a barn house next door to her parents.

    “She wants to live with some baby goats and some huskies,” Mullis said with a laugh. “She thinks that sounds like an ideal life.”

    But really what she wants first is to recapture some of the little moments she has missed in the past 10 months, like going upstairs and playing with her sister and sleeping in her own bed.

    “She wants to go walking on the boardwalk at the nature preserve by our house, swing with her sister, and have swordfights and nerf gun battles with her brother,” Mullis said.

    The Mullis family hiking

    “That’s why we are taking the longer, harder route right now, putting in the time and effort to get her back to those carefree kid-playing days if that’s possible.”

    There’s not a roadmap to follow, and maybe that’s OK, Mullis said. Maybe Kenley charts the path for another osteosarcoma patient who takes this route.

    Meanwhile, the family marches on, heading into the holidays with renewed hope and gratitude for how far they’ve come.

    “We are just trying to overdose on love and laughter and get through each day,” Mullis said, “pushing through to hopefully a better tomorrow.”

    Mullis family photo

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/from-near-death-to-the-life-of-the-party From near death to the life of the party 2021-12-09T11:43:00-05:00 2022-04-11T14:33:38-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Madalynn Hoffman Grzelak is a walking miracle.

    The 5-year-old, injured in a horrific lawnmower accident last July, wasn’t expected to live, much less run and play like other kids her age.

    But that’s exactly what the spirited little girl is doing today, thanks to the collaboration of a team of physicians and clinicians in multiple specialties at Riley Hospital for Children at IU Health.

    “This was a devastating injury she had, and now you would never know,” said Dr. Joshua Adkinson, a pediatric plastic surgeon at Riley. “She lost a tremendous amount of soft tissue in the flank and upper bowel area, entering the abdominal cavity.”

    Madalynn Hoffman Grzelak

    Dr. Adkinson was seeing a completely different Madalynn than the fragile girl he first treated at Riley last summer. Madalynn and her mom, Cassondra Grzelak, were back at Riley for a follow-up visit with Dr. Adkinson last month.

    The kindergartner was twirling around in the small exam room, jumping up and down off her mom’s lap and literally bouncing off the walls as she pretended to be a zombie.

    “It’s fun for me to see her like this, given how bad things were,” Dr. Adkinson said with good humor.

    DARK DAYS IN ICU

    Those were some dark days, he and Grzelak agreed. Madalynn was in the intensive care unit for several weeks. In all, she was hospitalized for about six weeks, but it felt more like a year, Grzelak said, wondering then if discharge day would ever come.

    When Madalynn left Riley, she was in a wheelchair, but today she requires no assistive devices to walk, thanks to excellent care, regular therapy and perhaps a dose of divine intervention, her mom said.

    “If I never believed in a God or anything before, I definitely know now that there is because there is no way she would be here if not.”

    Grzelak doesn’t like to talk about the accident, but she remembers the panic she felt as she tried to get help for her daughter.

    Madalynn Hoffman Grzelak

    She lives with her two girls (Madalynn has a 9-year-old sister) and her mom on a large piece of land in Freedom, Indiana, an unincorporated community west of Bloomington.

    “We had no cell service at our house,” she said. “When it happened, I was freaking out because I didn’t know where to take her. Everywhere is so far.”

    Grzelak drove her daughter to her neighbor’s house and had them call for an ambulance. The injured girl, who was rapidly losing blood, was taken to Terre Haute Regional Hospital, then immediately transferred to Riley.

    “They told me she likely wouldn’t make it on the ride there,” Grzelak recalled.

    “HORRIFIC INJURIES”

    But Maddie had other ideas, proving once again that children are often more resilient than adults, Dr. Adkinson said.

    “Their reserves are greater than ours.”

    Still, he admitted, it is hard to see a child injured so severely.

    Dr. Christine Caltoum, division chief for pediatric orthopedic surgery, agrees, describing it as “one of the most horrific lawnmower injuries that we have seen.”

    “She had an extensive right flank and buttock wound with gross contamination, exposed bone and bowel loops in the wound.”

    When she first arrived at Riley on July 15, Maddie was in extremely critical condition. Even if she survived, Dr. Caltoum said, it was unclear what her level of function would be. Her sciatic nerve was exposed in the wound. The sciatic nerve is the largest nerve in the body and is formed by the union of five nerve roots from the lower spine.

    The little girl underwent many surgeries, with extensive reconstruction by orthopedics, plastics and general surgery, the latter with Dr. Deborah Billmire.

    Dr. Caltoum said Madalynn’s case is a powerful example of the teamwork at Riley.

    “Not only did she have multiple surgical services involved in her care, other services such as infectious diseases, ICU, psychiatry, social work, child life and others were also involved,” she said.

    Madalynn Hoffman Grzelak

    The result is an active, healthy girl who keeps her mom and grandma on their toes. The only evidence of her accident is a slight limp that should resolve itself in time once she gains the confidence to put more weight on her right leg.

    And there are the scars she carries on her tiny body.

    GIGGLING AND WIGGLING

    Dr. Adkinson talked to Madalynn’s mom about those scars during their recent appointment at the Riley Outpatient Center. When he asked Madalynn if he could take a look at how the wounds on her torso and leg were healing, she said, “Nope, nope, nope” and folded herself into her mom’s lap.

    After some coaxing by mom, Madalynn let down her guard, but she ended up giggling and wiggling as Dr. Adkinson examined her scar tissue.

    “She looks great,” he said, noting how far she has come.

    Madalynn Hoffman Grzelak

    “She was a rock star in a very difficult situation,” he said of those days in the hospital. “We were doing daily wound checks and turning her. I don’t remember her being difficult at all.”

    She is a lot more squirrely now, so much so that the exam room can barely contain her. But it’s an amazing thing to see, he said.

    Her recovery “is as close to a miracle as we see in what we do,” the plastic surgeon said. And her active play is a good thing – it helps with joint tightness, he added.

    Madalynn Hoffman Grzelak

    Reviewing Madalynn’s surgical procedures, Dr. Adkinson said general surgeons had to close the abdominal wall to keep the bowel contents contained. After they did their part, orthopedics cleaned up the wound and Dr. Caltoum reconstructed the child’s pelvis to stabilize her hip and allow her to walk. The accident had shaved off part of her hip bone.

    Then it was plastic’s job to reconstruct the injury site, to fill the “giant hole” left in the flank and upper buttock area.

    In the end, surgeons rotated an area of skin from her abdominal wall to fill the hole in her flank.

    “That left a donor site where we stole the flap from,” he explained. “We robbed Peter to pay Paul, so we had to pay Peter back. We had to skin graft that area.”

    “BEYOND GRATEFUL”

    As she grows, her scars will grow with her, Dr. Adkinson said, though they might fade in time. There are cosmetic procedures that can be done later in life if desired, but for now, the little girl with the big personality is a walking success story. She has full function of her body.

    Grzelak hopes that maybe next summer, her daughter can go back to gymnastics camp, something she loved before the accident. Her other passions include Barbie dolls, Slime, playing with her big sister and watching videos on YouTube.

    As she tries to put the accident in the rearview mirror, Grzelak is thrilled with how well her daughter is doing today.

    “I’m just beyond grateful and feel very blessed that she had such good people around her,” she said. “They were really kind to her and to our family. They took such good care of Maddie. I don’t even have the words to express it.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/bond-of-brothers Bond of brothers 2021-12-08T13:18:00-05:00 2022-03-07T15:30:30-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    When they are not backpacking through national parks or climbing mountains, the Delks brothers are tackling the challenges of working in healthcare amid a pandemic.

    Delks brothers hiking

    But the rewards are many for John and James Delks, who have made healthcare a family business.

    John, facilities manager at IU Health Methodist Hospital, was thrilled recently when his younger brother, James, returned to Indianapolis after 13 years in Alaska to take on the role of EVS manager at Riley Hospital for Children at IU Health.

    For James, returning to the Lower 48 and accepting a job at the pre-eminent children’s hospital in Indiana was a dream come true.

    It was a return to his roots. A return to family. And a return to winters that don’t feature 20 hours of darkness every day.

    “I’m happy to be back with family and friends,” said James, who got his start as an environmental services worker at Methodist as a young man before going on to start his own cleaning companies, then eventually heading to Alaska and moving up into EVS leadership roles at two hospitals near Anchorage. “I’ve been gone such a long time.”

    It was a trip to Denali National Park in Alaska nearly 20 years ago with John and older brother Harry when James got the bug to pull up stakes and move north.

    The brothers love to seek out adventure, backpacking together and testing their skills as outdoorsmen.

    They’ve seen their share of moose and bears, but thankfully not up close and personal, James said.

    Delks brothers in the Smoky Mountain National Park

    “We like being outdoors and in nature,” he said, adding that the brothers started out hiking in the Hoosier National Forest when they were younger and like to take regular trips to Smoky Mountain National Park. “It’s a cool bonding experience.”

    It was older brother Harry who got John and James interested in healthcare careers. All of them worked at one time or another at Methodist, though Harry moved on to facilities management for Hamilton Southeastern Schools.

    John first joined Methodist in 1978 and worked there until 2005, when he left to work in other healthcare-related outlets. He returned a few years ago as facilities manager and was thrilled to see some of the same faces he remembers before leaving.

    “It’s really awesome for me to come back,” he said, especially now with the construction of the new hospital Downtown. “The Academic Health Center of the future is exciting.”

    John met his wife, Margaret, at work. She is a nurse at IU Health North, and the couple have two daughters and six grandchildren. James, whose wife works in sterile processing at IU North, also has two daughters, as well as two stepchildren. He added grandpa to his list of titles with the birth of his first grandchild. Grandfather and grandson haven’t met yet because the 1-year-old lives with his parents in Australia.

    Together, the brothers believe they are serving a higher purpose by working in healthcare.

    “I was drawn to healthcare because of all the good we can do,” John said.

    James agrees, saying his goal at Riley is to continue to attract top-notch people to join his crew of 160-some EVS team members.

    Riley Children's Healthcare employees converse

    “You have to treat people with extra respect in healthcare,” he said. “They need to feel how valuable they are to the hospital. We’re taking care of sick people, and we want our folks to feel good about what they’re doing, so in turn, they can make patients and families feel better.”

    He learned a lot about caring for people at a Catholic hospital he worked for in Alaska.

    “It was an important part of the culture,” he said. “And that’s true at Riley as well. I feel like I’m back home now. I am back home. The whole philosophy here is awesome.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/celebrating-six-years-with-his-new-heart Celebrating six years with his new heart 2021-12-07T13:40:00-05:00 2022-04-11T14:24:32-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Monday was a long day of tests for Michael Deiter. Not the kind of tests you take in school, but the kind that tell you your heart is doing its job.

    Michael was at Riley Hospital for Children at IU Health this week so his care team could put his transplanted heart through its paces.

    Michael Deiter

    For the 15-year-old, it was hard enough to be up before dawn, but it was a chance to see old friends like cardiologists Dr. Robert Darragh, Dr. Marcus Schamberger, pediatric cardiac sonographer Nancy Kehlenbrink and so many others who have been by his side through the years.

    “Long day with some of the greatest, most caring people we have had the pleasure of knowing for 15 years,” wrote Jennifer Gray, Michael’s mom, in a post on Facebook after her son sailed through his annual stress test.

    It’s been a long 15 years too, Gray said, starting within days of her son’s birth. And if not for her mother’s intuition (Michael is the youngest of her four kids), his future might have looked very different.

    Despite having no indication that there was anything wrong during pregnancy, Michael was born (at another Indianapolis hospital) with multiple complex heart defects that weren’t diagnosed until he was rushed to Riley when he was just four days old.

    “It was a complete shock,” Gray said.

    And it was only after she insisted multiple times that her son’s lethargy and breathing were not normal for a newborn that she was really heard.

    ADVOCACY SAVED MICHAEL’S LIFE

    “I kept telling the doctors that something was wrong because he was sleeping all the time. Everybody had a reason for him to be tired, but he would hardly even nurse,” she said.

    Still, she and Michael’s dad, John, went home with their bundle of joy just as the weekend was about to start. That Sunday morning, Gray’s parents were visiting from Wisconsin, and she had Michael sitting on her lap.

    “Michael was breathing funny. His nostrils were flaring,” she said. “My mom said it reminded her of my younger brother, who also has some congenital heart defects, though not anywhere near as severe.”

    That night as her concern grew, Gray called the after-hours pediatrician, and the on-call nurse summoned an ambulance to their home. The paramedics checked out the newborn and determined there was nothing to worry about.

    Gray admits to second-guessing herself for a minute.

    “You start to wonder, am I crazy, am I sleep-deprived? No, I know what I’m doing,” she told herself.

    Michael Deiter

    She followed up with her pediatrician the next morning, and that’s when the physician heard the heart murmur and referred Michael to Riley that day.

    Turns out, the little guy was born with multiple heart defects, including double inlet single ventricle (only one working pumping heart chamber), coarctation of the aorta (a narrowing of the aorta that can prevent blood from circulating to other organs) and septal defect (a hole in the wall between the heart’s lower chambers).

    “We saw Dr. Timothy Cordes, and he was phenomenal,” Gray said. “He spent a couple hours with us, drawing diagrams and trying to help us grasp the severity of it. I completely get it now, but I didn’t back then.”

    She shudders to think what might have happened if she didn’t seek more answers.

    “I think that had we waited, he may have passed away in his sleep.”

    Michael had his first of many surgeries the day after he arrived at Riley. It would be the beginning of a long journey in and out of the hospital.

    “We’ve been in for every single holiday,” Gray said. “He’s had four pacemakers, he had arrythmias requiring cardioversion – 10 to 12 of those. He was a classic transplant case. They had done everything they could do surgically and with medication to make his heart last, and he was in heart failure.”

    TIME FOR A TRANSPLANT

    In the spring of 2015, when he was 8 years old, Michael was added to the heart transplant list and entered Riley to wait. On the 100th day of his admission, that heart arrived.

    Dr. Mark Turrentine was his surgeon, as he had been for all but one of Michael’s heart procedures.

    “We had a 100-day party planned that day, with cupcakes and everything, before we knew about the heart,” Gray said. “So it’s neat that it happened that way.”

    Michael Deiter

    Since then, Michael has flourished, she said. He has not had one inpatient stay since those months while he waited for and recovered from his heart transplant.

    She would love to share more of his story with his heart donor’s family and hopes some day they might want to learn more. All they do know is that the heart of a little girl from Tennessee is beating in their son, and they are forever grateful.

    “His dad and I both wrote a letter (sent via Indiana Donor Network), and we hope that someday we are one of those families that get a letter or something because I would love to know more about her,” Gray said. “I know it’s a gut punch. You don’t know what to say, but yet there’s so much to say.”

    “WE ARE VERY LUCKY”

    Now a freshman at Scecina Memorial High School, Michael loves video games and hanging out with friends, said his mom, who remarried the year before Michael’s transplant. All of the family has pulled together to support Michael throughout his health journey.

    Michael Deiter

    “We are very lucky,” Gray said of her family, her husband Sean’s family and her former husband and his family. “We celebrate birthdays together, go to doctor appointments together.”

    She is also thankful for her Riley family, noting that so many of the physicians and technicians they’ve had since shortly after Michael’s birth.

    “I think that is so rare, but it’s been so comforting because they have all treated him like he was their child,” she said. “It’s been amazing to have that 100 percent comfort in his care. That comfort, that peace and that total trust.”

    Over the 120 days that Michael was hospitalized before and after transplant, the family practically lived at Riley. They had sleepovers with their other kids, movie nights, played board games and celebrated birthdays.

    “We wanted life to go on for the other kids and for him,” Gray said.

    The Riley team took care of them all through the years.

    “Especially in the early years when he was so sick, there were times when I was a mess and completely broke down and there were nurses who sat with me,” she recalled. “They took care of our whole family.”

    Michael Deiter

    Michael comes back to Riley monthly for labs and every two months for transplant clinic, when he sees Dr. Darragh. In addition, he has annual heart caths and a stress test.

    With Christmas approaching, the family is pulling out a few of their favorite ornaments for the tree, including a couple celebrating organ donation.

    On his birthday cake every year, a green ribbon or balloon denoting organ donation honors his donor.

    “We always remember her on his birthday,” Gray said.

    His transplant anniversary is a little more quiet, she said, because Michael is humble and doesn’t like too much attention.

    “He grasps how miraculous it is that he’s still here, but he doesn’t like to talk about it.”

    Gray, however, loves to talk about it and is willing to share his story whenever and however it will help.

    “Anything I can do to bring awareness to organ donation is what I want to do.”

    To learn more about organ donation, click here.

    ]]>
    https://www.rileychildrens.org/connections/podcast-maternity-matters-stork-team-supports-patients-during-high-risk-deliveries PODCAST: Maternity Matters - Stork team supports patients during high-risk deliveries 2021-12-06T08:50:00-05:00 2021-12-06T08:54:03-05:00

    Listen to more Maternity Matters episodes.

    ]]>
    https://www.rileychildrens.org/connections/riley-inpatient-rehab-unit-earns-impressive-three-year-accreditation Riley inpatient rehab unit earns impressive three-year accreditation 2021-12-02T09:38:00-05:00 2022-03-28T15:18:20-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    The news broke on the day before Thanksgiving, and it was cause for celebration on the Riley Hospital for Children inpatient rehab unit and in a home not far from the Indianapolis hospital.

    For the first time in its history, the pediatric rehab unit earned three-year accreditation status from an international accrediting body, CARF, putting it in a select group of children’s hospitals around the nation and world.

    For Kathleen Osborn, pediatric inpatient rehabilitation program manager, it’s a goal she and her team have been working toward for years. For Justin and Shanda Grounds of rural Morgan County, it is a tribute to the people who helped their son become independent again after a devastating injury left him paralyzed.

    Osborn began working as an occupational therapist at IU Health Methodist Hospital in 2007, back when the pediatric rehab unit was housed there. It moved to Riley in 2011.

    “They were talking about getting accreditation since before I was there, so it’s been a long conversation,” Osborn said.

    When she moved over to Riley as manager three years ago, she was determined that the time for talking was over.

    “We’re going to do it,” she said. “And it took every bit of those three years to get where we needed to go.”

    Many of the processes and procedures were already in place, but it was a massive undertaking to document everything and be sure everyone was on the same page. That includes not only patient-centered goals but also incorporating caregivers into treatment goals.

    Osborn interacts during therapy

    None of it would have been possible without buy-in from the entire team and others throughout the system, said Osborn, expressing gratitude for the collaborative spirit.

    “It required everyone, and that team is beyond the medical and therapy team,” she said. “It’s social work, child life, creative arts and many others who supported us system-wide.”

    The achievement represents the highest level of accreditation that can be given to an organization and shows Riley’s substantial conformance to CARF standards, she added.

    In its report, the accrediting body said the Riley rehab unit has demonstrated from every aspect of operations that it is fully committed to the care and well-being of patients, that the leadership team is experienced and actively involved in all aspects of the program, and that the team has established a culture of openness, trust and respect.

    Those served in the program “benefit from the commitment, expertise and enthusiasm of engaged physicians, rehabilitation leadership and frontline staff, as well as ancillary supporting departments that promote and provide quality outcome-oriented services,” the report said.

    An organization receiving a three-year accreditation has put itself through a rigorous peer review process. It has demonstrated to a team of surveyors during an on-site visit its commitment to offering programs and services that are measurable, accountable and of the highest quality.

    Anthony Ingram racing her therapists in the Anthony Olympics

    That’s what so many patients and families have found over the years. Whether it’s 16-year-old Anthony Ingram challenging his therapists to a race in what they dubbed the Anthony Olympics, or Lucas Grounds getting a tour of Lucas Oil Stadium before his discharge, their stories don’t end with their injuries.

    Lucas, who was critically injured in a dirt bike accident last year, spent 61 days in the hospital, much of that time on the rehab unit after surgery.

    Lucas with his Riley care team

    “The care he received at Riley was amazing,” Shanda Grounds said. “They had goals for him that I believed at first were going to be too lofty … but they eased my fears and talked me through it all.”

    She and her husband, Justin, have a special place in their hearts for the physical and occupational therapists who worked with Lucas – namely Lindsay Schaefer and Whitney Kozlowski – who they said consistently went above and beyond to help their son reach an impressive level of independence.

    “I met those people during the worst time of my life,” Shanda said. “It’s something a parent never wants to experience, but the entire time we were there, and still almost a year later, he has not had one bad day. it blows my mind.”

    A lot of that is due to Lucas’ personality, but it’s also a result of the team’s compassionate yet demanding approach to therapy, she said.

    “They are there to help you learn your new normal, to help you realize this is not the end of your life, this is something different and new. They treated us not like a number on the chart. They treated Lucas like a family member.”

    Because of the dedication of the rehab team and of Lucas and his family, the high school junior has excelled since being discharged last February.

    Read more about Lucas and his life since the accident in a story later this month.

    File photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/after-runners-collapse-parents-praise-angel-nurses-physicians-by-her-side After runner’s collapse, parents praise “angel nurses,” physicians by her side 2021-12-01T12:32:00-05:00 2022-04-11T14:23:29-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    It was all Janet Mann could do to keep from running onto the course.

    Her daughter had collapsed just yards from the finish line of a cross-country sectional race at Mount Vernon High School in Fortville. Emma Mann, a senior at New Palestine High School, tried to get up twice and fell again and again.

    Emma Mann

    She was leading that race, her mom said. Even a broken leg wouldn’t have stopped her. But something had. Another runner, Ella DesJean, a student at Franklin Central High School, came upon her and stopped to encourage her. Helping her up, though, would have been grounds for disqualification.

    That’s why Janet Mann held back too. She didn’t want to see her daughter disqualified after working so hard all season. But she knew something was wrong.

    Emma has battled anemia since her freshman year and sees Dr. Allison Yancy in the hematology clinic at Riley Hospital for Children. She had recently received an iron infusion, though, so the fatigue her parents began noticing a few days before the race puzzled them.

    EARLIER IN THE RACE

    “She doesn’t look right,” Mann’s husband, Jeff, had said about halfway through the sectional competition. “She looks really tired.”

    But still, Emma kept running.

    The 17-year-old would tell them later that she knew something was wrong at the 2-kilometer mark in the 5K race. She told herself she could power through to the end.

    She almost made it.

    Mann, who was hobbled by a broken ankle that warm October day, decided to head to the finish line with her husband so they could greet their daughter at the end of the race.

    Emma was leading when she came up on the last stretch. She looked a little wobbly, her mom remembers. At first, her parents thought her leg was hurting her. Within seconds, she was down.

    “There wasn’t another runner anywhere around her,” Mann recalled. “She just went down. She started to get back up and fell again.”

    A few seconds later, Ella DesJean came across her competitor on the ground and stopped.

    “She’s an amazing kid,” Mann said of the FC runner. “She said, ‘Emma, come on, get up. You’re so close. Let’s finish together.’”

    Meanwhile, Mann wanted to go under the flags lining the course to get to her daughter, but she held back for fear of Emma losing a shot at finishing the race.

    “That was horrendous as a mom,” she said.

    ROLLED TO THE FINISH

    Emma didn’t have the strength to stand, and Ella was prevented by the rules from helping her up. Eventually, Emma rolled over the finish line and closed her eyes, her mom said.

    That’s when Mann raced to her side and cradled her daughter, who was pale and weak, just as another woman came to help. Identifying herself as a nurse, the woman checked Emma’s vitals as someone called for an ambulance. Her pulse was rapid, so they worked to cool her down and reassure her before the ambulance arrived to take her to IU Health Saxony Hospital.

    Emma would later be transferred to Riley Hospital after doctors identified a potential cardiac issue. Now under the care of Dr. Megan Wilde, a Riley cardiologist, she continues to undergo tests to monitor her heart function.

    A Riley physician told her that first night that she was lucky. She had experienced just the sort of irregular heart rhythm that can cause sudden cardiac arrest.

    She didn’t feel lucky in the moment, Mann said. Emma pleaded with the doctors to speed up the testing so she could be ready to run again – to compete at state. But after failing a stress test, it became obvious that she was not going to be running for a while.

    That was the first time she cried.

    LOOK FOR THE HELPERS

    In the chaos after the race, Mann told the nurse by her side that she wanted to be sure someone thanked the FC runner for her kindness.

    “I’ll be sure to tell her,” Mann recalls her saying. “I’m her mother.”

    Mann was blown away by that simple statement.

    “That girl has more character in her little body than a lot of adults do,” she said.

    The nurse is Stacy DesJean, a former Riley nurse who says the compassion her daughter displayed comes naturally to her.

    “She is a caregiver and is always looking out for others,” DesJean said. “Especially this last year has made her aware of other people’s situations.”

    That’s because a year ago, Ella’s little brother, Will, was diagnosed with cancer and she has helped take care of him. Will, who was featured in another Riley story in October, completed his treatment and continues to regain his strength.

    Health scares have brought the two high school runners from competing schools together, and they have forged a friendship. Emma presented Ella with the IHSAA Face of Sportsmanship pin at her cross-country practice earlier this fall.

    Emma Mann

    Recently, Emma invited Ella to attend a breakfast for Camp Little Red Door, a program for pediatric cancer patients. For years, Emma has provided Peace Bears to camp participants and others, and she recently presented one to Will.

    “Emma loves to help,” Mann said.

    So, it takes a special kind of grace to receive help when the tables are turned. Emma is learning how to do both.

    Emma Mann

    Until she gets clearance to be active – running, swimming and biking – she is focused on serving others. Her Peace Bear project is one way to spread joy, and she is working on a service project through school to get more AEDs (automated external defibrillators) into Hancock County schools. In addition, she continues to volunteer weekly with a special-needs choir at Butler University.

    “Watching your child collapse is the worst moment you can imagine,” Mann said. “But Mr. Rogers is famously quoted as saying, ‘Look for the helpers.’ We had helpers at every turn,” she added.

    GRATEFUL HEARTS

    As her daughter continues to be monitored by her Riley team and awaits a cardiac MRI later this month, Janet Mann wants to put the focus back on all the people who have helped Emma these past two months – her friends and teammates, coaches and all the people at Riley involved in her care.

    “I can’t even tell you how wonderful they’ve been,” Mann said. “When you go to Riley, you have no idea, in a circumstance like ours, how bad it is. And when you walk in the door, they treat you as if you’re the only person there. There’s just a comfort there that is a little different.”

    That is all the more impressive when you consider the current pressures in healthcare, she said.

    Emma Mann

    “The hospital has surely been understaffed at times, yet they continue to operate with grace and love while providing unbelievable care to children and families during their most vulnerable times,” she said.

    “Riley does an amazing job of rising above the challenges to help patients feel safe, secure and cared for completely. In a situation that has been plagued by uncertainty, one thing is certain: Emma has been cared for in one of the nation’s best children’s hospitals right here at home, and we should never take that for granted,” Mann said.

    “On the contrary, we should express our gratitude to those in healthcare who are likely overworked right now but certainly never show it to families who are feeling overwhelmed and afraid.”

    “ANGEL NURSES” AND PHYSICIANS

    She praises all of the “angel nurses” at Riley and singles out Dr. Wilde and Dr. Yancy for always going the extra mile and being generous with their time, helping Emma and her parents talk things through and feel confident they are on the right path.

    “Both are amazing doctors and even better people,” she said. “It’s the human element that takes the care to the next level.”

    Dr. Wilde describes the Manns as an “absolutely lovely family” who have been patient as doctors work to tease out any underlying illness in Emma that would have precipitated her symptoms. Initial tests were inconclusive.

    “They have been very understanding as we have needed to tailor our treatment plan to Emma’s needs and symptoms,” the physician said. “This is a process, and we are going to learn it together. We remain hopeful that we will be able to get her to a place where she can do those things she loves so much. Time will hopefully allow us to better understand what her options are.”

    In this season of giving, Mann wants to give thanks for all the helpers – at Riley and beyond – for their compassion, their kindness and their care.

    Emma Mann

    That includes the IHSAA official who was officiating the race when Emma collapsed. After her discharge from Riley, he presented her with an IHSAA hat and a lap bell with her name and the race date engraved on it.

    This is not how Emma or her parents expected her senior year to go. The teen, who wants to be a special education teacher, is still hoping to run in college on scholarship. Having to cheer from the sidelines while her teammates continued running this year hasn’t been easy, but she has handled it with grace, her mom said.

    “Sometimes your parenting is revealed in the strangest spaces,” Mann said. “You hope you raise your kids to be graceful, resilient, hopeful and positive. You hope you don’t have to see it in the worst circumstances, but when you do, it does feel good.

    “She’s going to be OK in life.”

    Photos submitted and by Janet Mann

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    https://www.rileychildrens.org/connections/bringing-cheer-to-kids-all-year Bringing cheer to kids all year 2021-11-29T13:38:00-05:00 2022-04-08T11:51:12-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Annastaj’sha Taylor has been a Riley kid her entire life, so the 15-year-old has received her share of toys and crafts, courtesy of the Riley Cheer Guild, during her many hospital stays.

    Diagnosed with a gastrointestinal disorder shortly after birth, Annastaj’sha is well-known on the ninth floor of Riley Hospital for Children, where she spent Thanksgiving last week.

    She might not have been thrilled to be back in the hospital, but the team on 9 East was overjoyed to see her, according to her grandmother, Fredia Taylor, who works in nutrition services at IU Health North Hospital.

    “She gets along really well with everyone there … unless you’re trying to stick her,” Taylor said, with a chuckle.

    Taylor smiles holding a "Blockworks" Magazine in Riley

    Thanks to Riley’s Child Life team, which helps to keep patients’ spirits up by distributing LEGOs, Barbie dolls, UNO cards, art supplies, crafts and other items from the Toy Room at the hospital, the teen has plenty to distract her from IVs and blood draws.

    A sophomore at Crispus Attucks Medical Magnet School, Annastaj’sha hopes to pursue a medical career after graduation, Taylor said, and ironically is taking a class now in phlebotomy – learning how to draw blood.

    The Riley Cheer Guild depends on the generosity of donors to keep its Toy Room stocked with gifts for all ages. Check out its Wish List here.

    All donations must be shipped to Riley Cheer Guild, 705 Riley Hospital Drive, RM 4510, Indianapolis IN 46202, or scheduled in advance for drop-off by calling 317-944-8705.

    In addition, an anonymous friend of the Riley Cheer Guild will match all Giving Tuesday (Nov. 30) financial donations up to $1,000.

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/evs-team-supports-riley-food-pantry EVS team supports Riley Food Pantry 2021-11-22T14:35:00-05:00 2022-04-08T11:45:46-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Kat Winton, Riley Hospital social worker and coordinator of the Riley Food Pantry, is giving thanks this week and every week for the generosity of donors and for the efforts of the three ladies pictured here to support the pantry.

    EVS team members Bernice Powell, Michelle Williams and Dorothy Andrews can be counted on every Monday to check in with Winton to start the week off right.

    “My Monday mornings in the pantry wouldn’t be the same without them checking in on me,” Winton said. “Not only do I get to enjoy time with them, but they support their Riley colleagues by walking them through the pantry, refilling the team member Snack Closet and ensuring that the pantry’s donation bins have been checked.

    “I am so very appreciative of them for taking time out of their busy day to support their fellow team members.”

    Team member snack closet

    The Riley Food Pantry, which opened last year as a response to the COVID-19 pandemic, is on the first floor of the Downtown hospital, just down the hall from the Ronald McDonald House, Room 1511P.

    The pantry has shortened holiday hours this week: It will be open Tuesday from 7 to 8 a.m. and 3:30 to 4:30 p.m. for team members. Patient families may visit by referral between 9 a.m. and 3 p.m. Tuesday, and between 9 a.m. and 1 p.m. Wednesday. The pantry will be closed Thursday and Friday this week.

    To donate to the Riley Food Pantry, visit the RFP Amazon Wish List.

    To give a shout out to a team member or department you think is worthy of recognition, email mgilmer1@iuhealth.org.

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    https://www.rileychildrens.org/connections/former-iu-athlete-brings-joy-pride-to-riley-project Former IU athlete brings joy, pride to Riley project 2021-11-21T16:22:00-05:00 2022-04-04T10:37:35-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Delroy Baker Jr. is sitting in the atrium of the new Riley Children’s Health Maternity Tower. The glass elevators bop up and down behind him as he soaks up the sense of achievement that comes from helping open the tower.

    Baker, a project coordinator with the Design and Construction team at IU Health, came late to the party, actually. He joined IU Health in August and was immediately thrust into the role of outfitting the new tower with the equipment and supplies needed for opening day.

    That big day was delayed from September to November due to COVID-19, giving him more time to feel a sense of ownership in the new wing before moving on to the next building project.

    “It will be sad to say goodbye to my first baby, so to speak,” he joked, as he considered the task of wrapping up the project and leaving Riley.

    The expansive addition to Riley Hospital for Children focuses on new moms and their babies, bringing expert care for both under one roof.

    Baker professional photo

    For Baker, it’s part dream, part destiny how he came to be involved.

    A first-generation American, he was born to Jamaican parents in Florida, where he spent his formative years. Those years were troubled by a health condition that had him and his mom in and out of hospitals.

    The petit mal seizures he suffered as a child would strike without warning – he’d be crossing the street to the school bus stop and suddenly stop in place. Sometimes he would walk into walls. Brief, sudden lapses of attention were how they presented.

    “I spent a lot of time at hospitals in Florida in the early 2000s,” he said. “It feels like forever ago to me when I spent nights at the hospital getting all the ice cream and video games I could stand.”

    He took medication for a while, but the seizures eventually disappeared. The experience, however, shaped him.

    He always knew he wanted to do something to help kids. Recruited to play football at Indiana University, the 6-foot-6 offensive lineman volunteered at Camp Riley and other places as a student athlete.

    He graduated from IU with a degree in psychology and went into social work for a few years, before deciding he needed a career change.

    “I have a natural affinity for people and felt I could use my degree in any field,” he said.

    When he interviewed for the project coordinator role at IU Health, he was immediately drawn to the culture.

    “They explained the IU Health values, and I’m like, ‘sign me up,’” he laughed.

    Being assigned to the Riley Maternity Tower project in his first week on the job was an honor, said Baker, who is planning a July wedding with his fiancée, Madeleine Vala.

    Baker and his fiancee, Madeleine Vala

    “There’s no better way to kick off my career here than with this project. I have a heart to help people, and I’m drawn to working with kids and parents.”

    What are the odds, he thought, that he would once again be in a hospital, this time as an adult walking past neurology every day and seeing kids and parents going in for appointments, just as he did as a child.

    In a social media post after the tower opened earlier this month, Baker wrote about how he feels connected to the children he sees every day at Riley, kids whose smiles persist despite the challenges they may face.

    “I was once in their shoes, spending many days with my mother in and out of hospitals, countless trips to the doctors’ offices and testing to determine what was the cause of the seizures I was experiencing as a child.”

    While most children born in the new Riley Maternity Tower won’t have those experiences, they will have access to the best specialists immediately, in the same building, should they require specialized treatment, he said, concluding with: “Indianapolis families, here’s to the best care designed for you!”

    Baker has made an impression on the team in the new tower, according to both Nicole Toole, director of maternity and newborn health, and Paula Shaner, clinical program manager.

    “Delroy is the quiet strength of the Riley Maternity project,” Shaner said. “He listens intently and performs so efficiently that I’m in awe.”

    Quick with a smile and a helping hand, she added, “he is smart, kind, funny and has a gigantic heart.”

    And about those IU Health values? He lives them, she said, displaying teamwork, compassion and purpose in everything he does and delivering excellence in his work.

    “Strength, determination, commitment and joy are the things that Delroy has brought to this project. I am so excited to watch him do great things for IU Health.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/a-heartwarming-reunion-in-the-or A heartwarming reunion in the OR 2021-11-17T09:48:00-05:00 2022-03-28T14:00:02-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Keleigh Sims’ history with Riley Hospital for Children goes back 23 years, when she was an infant and needed lifesaving heart surgery.

    She returned to the operating room recently, not as a patient but as an OR nurse, a role she recently accepted after working as a bedside nurse on the heart floor.

    Keleigh Sim's Professional photo at Riley Children's Health

    Now imagine her surprise last week to find out that one of the surgeons joining her that day in the OR would be none other than the esteemed Dr. John Brown, who retired from full-time work last year but still likes to come in to get his hands dirty, so to speak.

    Dr. Mark Rodefeld told the OR crew about 15 minutes before the surgery began that Dr. Brown would be joining to assist.

    Sims couldn’t believe her good fortune. When Dr. Brown came in dressed in scrubs, she introduced herself again from behind the mask, reminding him that he had operated on her for a rare combination of heart abnormalities called scimitar syndrome. She also was part of a research study he did on the syndrome.

    Baby photo of Sims

    He was as stunned as she was, and after chatting for a minute, he suggested they get a picture.

    “He airdropped the photo to me and said, ‘you’ve got to send this to your mom,’” which of course she did.

    “Just a casual Wednesday in the OR doing heart surgery with the surgeon who did my heart surgeries,” she said. “I’m just in awe that I get the chance to do what I do every day.”

    Seeing a world-class surgeon like Dr. Brown take on an assisting role in the OR was amazing to see as well, Sims said.

    “I think he just genuinely loves it. He’s holding the heart while Dr. Rodefeld is sewing a patch. He is such an incredible human.”

    It takes a big person to assist after 40 years of leading in the OR, Sims said, but for Dr. Brown, the energy of the operating room and helping patients is the draw.

    “He is still very much involved in the CV surgical world. It’s crazy how talented he is and how much of an impact he’s had. He saves lives, but he’s so normal.”

    For Sims, working in the OR has been humbling.

    “It’s like a whole different world down there,” she said. “Seeing what they do is incredible.”

    She knew when she applied for and got a spot on the CV operating room team that she would likely be called in to work unplanned shifts. But she took what her mom said to heart.

    “How mad could you be if it’s Christmas Day and you have to go in for a heart transplant,” her mom asked her. “That’s an honor.”

    Sims agrees.

    “My perspective is so different because I’ve been on both sides,” she said. “Just seeing how much these surgeons care, it’s humbling to be in the room.”

    Childhood photo of Sims clutching a giraffe stuffed animal

    From heart patient to bedside nurse in the heart center to operating room nurse working alongside the surgeon who saved her – she really has come full circle.

    “It’s overwhelming. It’s just so cool.”

    ]]>
    https://www.rileychildrens.org/connections/every-dog-has-its-day-at-riley Every dog has its day at Riley 2021-11-16T12:25:00-05:00 2022-04-11T14:20:58-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    They’re back!

    Riley Hospital for Children’s most popular guests have returned to the hospital, ready to snuggle up to sick kids and weary staff.

    Pet therapy was put on “paws” 20 months ago when the COVID-19 pandemic forced Riley to restrict access for the safety of patients.

    But those fluffy fur buddies have finally begun to return, much to the delight of kids, parents and team members.

    Last week saw the return of Maddie and Panda, two pups who are opposite in size but identical in their love for children.

    Pet therapy

    Maddie is an 8-year-old Coton de Tulear, her white coat as soft as cotton (“coton” in French). Her human is Jane Bultman, a former Riley kid herself.

    Both are tickled to be back in the children’s hospital after a long period of waiting.

    “We onboarded just before COVID,” Bultman said.

    In fact, they had just one visit under their belt before the shutdown. Today’s visit is their second since the doors reopened to four-legged friends.

    “Maddie is so excited to be here. She knows we’re at Riley when we come into the parking garage.”

    Pet therapy

    Maddie, who weighs about 12 pounds, started training with Pet Partners to be a therapy dog at 6 months. Every two years, she gets re-evaluated.

    “I thought it was a great full-circle way to give back,” Bultman said about bringing her pup to Riley. “I love sharing my dog with people, and the kids just light up. For parents, I feel it’s a nice diversion, it brings out something joyful.”

    Kim Ziegler, Riley pet therapy coordinator, is thrilled to let the dogs back in.

    “It was a struggle,” she said of COVID. “Everything changed. This helps bring a little normalcy back.”

    There are about a dozen therapy dogs who visit Riley. They take turns, generally coming once or twice a month for a couple of hours at a time.

    Just the sight of them padding through the hallways of a unit makes people smile, and that alone is worth it. Though team members are not supposed to pet the dogs in the hallway, they have a chance after the pups visit patients to get some snuggles in a conference room.

    Pet therapy

    Ava Leal is excited to see Maddie come through the door of her room on the ninth floor.

    “Hi Maddie,” Ava says, grinning as the little dog settles into a spot on top of a cloth on Ava’s bed.

    “She’s sniffing me. I love her,” Ava says, watching as Maddie does a trick near the bed. “That’s a good girl.”

    Maddie and her therapy dog peers are social animals, so not being able to visit for so long during COVID was really hard, Bultman said.

    All that is forgotten now as Maddie enjoys the attention of people big and small at the hospital.

    Pet therapy

    The next day is Panda’s chance to greet fans. The 165-pound Newfoundland is named for her black and white coloring, and you can’t miss her rounding a corner.

    In fact, it’s a parade led by Ziegler, pulling a Riley wagon packed with cloths, sanitizer and cards featuring the dog of the day. Behind Ziegler is 5-year-old Panda wearing a Thanksgiving headband and waddling beside her human, Vicki Reiskamp. Team members stop to smile and greet the affable Newfie.

    “That just made my day,” one nurse said.

    Pet therapy

    Like plenty of people who were in quarantine in the early days of the pandemic, Panda put on some COVID weight, Reiskamp said, so being out and about again is good for her health and her disposition.

    Nothing pleases the big pup more than a good belly rub, and she’ll give you a high five in exchange for a treat.

    Her first stop this day is to see little Knox Van Ruler, whose mom remembers Panda and Reiskamp from a previous visit.

    Pet therapy

    “We have Panda’s card on our refrigerator,” she said, as her little redhead reached out to stroke Panda’s soft fur coat.

    During COVID, the family celebrated Knox’ second birthday with a puppy dog parade. Friends, family and neighbors drove by their house with their dogs waving from the car windows.

    After a couple of other patient visits, Panda stops in a conference room, where she is the main attraction before a team huddle.

    It seems everyone needs a little puppy love.

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/she-was-the-easiest-baby-my-only-baby “She was the easiest baby, my only baby” 2021-11-14T17:03:00-05:00 2022-03-23T10:46:42-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Sirena Nieves remembers her daughter’s smile, her laugh and her fight.

    She remembers the joy she brought to those around her, in spite of the pain she knew in her short life.

    And she remembers the exact moment her little girl passed away: 9:48 a.m. Tuesday, April 28, 2020.

    Elliana Marie Rose Wright was just 15 months old when she died at Riley Hospital for Children after suffering complications related to multiple congenital heart defects.

    She’s been gone now longer than she was on this Earth, but her sweet memory is very much alive in the halls of the cardiovascular intensive care unit at Riley, where she lived for so many months, celebrating Thanksgiving, Christmas, her birthday and all the special days in between.

    “She was always smiling, always happy,” Nieves said. “She was the easiest baby, my only baby.”

    The morning Elliana died, Nieves remembers how she had gone outside to get some fresh air. In that early morning darkness, she called out to God to take care of her child, who was running out of fight after multiple setbacks.

    “Elli brought me really close to God, and I asked him to heal her completely, and if that meant she has to go upstairs (to heaven), she has to go upstairs,” Nieves said.

    A few hours later, Elliana drew her last breath despite lifesaving measures taken by the team in her room. Slowly, quietly, they disconnected her from the monitors and gently placed her in her mother’s arms.

    “I held her all day,” Nieves recalled. I don’t think I left Riley until about 5 or 6 o’clock. I had all of the Riley nurses who loved her there. They were absolutely amazing. They just loved her so much.”

    HONORING A CHILD’S MEMORY

    Family nurse practitioner Erica Vinson cared for Elliana during the eight months she spent at Riley before she died. Vinson, who worked on a medical-surgical unit before coming to the CVICU, didn’t have a lot of experience with patients passing away.

    Vinson and her team embrace for a photo

    The little girl’s death hit her and many of her colleagues hard. The unit sent flowers, and Vinson and some of the team went up to northern Indiana for the funeral. But Vinson wanted to do more – not just for Elliana and her family, but for all of the patients who don’t get to go home.

    “We always would send a card a couple weeks afterward that we all would sign, and I think that was very heartfelt, but I wanted to do more,” she said.

    And in order to do more, someone had to be willing to take on that responsibility. That someone was her in those early days. But she’s been joined by a team of dedicated nurses and staff who want families to know how much their child has meant to their Riley team.

    With input from Dr. Larry Markham, division chief of pediatric cardiology at Riley, other team members, the Riley Children’s Foundation and Mended Little Hearts, a bereavement committee was formed in the Heart Center last year. But it took until this year for the council to get its legs under it.

    Carrie Davison, clinical manager for CVICU, is proud of the heart that her team shows, especially during difficult times.

    “These are things that make nursing feel healthier when we know we are taking care of each other and we know we have a process in place to help grieving families,” Davison said.

    TREASURED KEEPSAKES

    Seeing Vinson and other members of Elliana’s care team, both from CVICU and the step-down unit, at her funeral last year meant a lot to Nieves. A card they brought with them contained notes from many nurses sharing how much her daughter had impacted them, she said.

    Later, she received a “heartbeat plaque” with Elliana’s name and heartbeat image engraved on it.

    Heartbeat monitor plaque

    “To go from watching monitors all the time and seeing the heartbeat in the hospital, then to lose your child but see their heartbeat in that way is very special,” she said. “That plaque means so much.”

    She keeps it in a curio cabinet at home, along with her baby’s favorite stuffed animals, rattles, superhero cape and other treasures from Elliana’s life.

    For Nieves, maintaining that connection with her daughter’s Riley team has given her strength to keep moving forward.

    “I miss Riley so much; it was our home for so long,” she said, recalling how one doctor referred to Elliana as the “boss baby” of the unit.

    “She would be in her exersaucer in her room, and she had to have attention from everybody in the hallway. If the nurses had a hard day, they would come to Elli’s room, and she would help them get through.”

    “THEY HAD AN IMPACT ON US”

    That bond is something the bereavement committee wants to honor, not just for one patient but for any Riley heart patient who dies.

    “We want to let families know that however long or short their child’s time was on the unit, they had an impact on us and are not forgotten,” said Vinson, who funded the initial plaques herself before a donor provided funding through the Riley Children’s Foundation.

    The committee also sold T-shirts and snacks in the breakroom to pay for postage and other expenses. They recently published a brochure that allows parents to opt in or out of the bereavement services, which include cards sent on anniversaries and other special days, in addition to the heartbeat plaques.

    Nieves, Elliana, and Riley team gather together

    “People who do not respond are considered to opt out,” Vinson said. “We want it to be therapeutic, not triggering. If it’s triggering, we want them to be able to throw the brochure in the trash and not deal with it.”

    Nieves received her brochure recently and keeps it in her curio cabinet with Elliana’s other mementoes.

    “I thank Erica so much,” said Nieves, who appreciates that her baby girl is not forgotten. “So often with Riley stories, the baby gets better and goes home, and this story is a lot different.”

    What’s not different is the love that was part of her young life.

    And honoring that life is important to Vinson and her team.

    “I always felt when it comes to end of life, I’m not very good in the moment in those situations,” the nurse practitioner said. “I feel like I don’t say the right things or provide enough support,” she added.

    “But I feel it so deeply in my soul. When I leave, I cry, and it hurts that these families are dealing with this and I pray for them every single day. I feel it so strongly, but I don’t feel like I know how to express it or show it, and this is my way of doing that.”

    RILEY WAGON FOR ELLI

    Nieves sold bracelets in memory of her daughter and raised more than $2,500, enough to fund a Riley wagon through RCF in June. Now, when they see the #ElliStrong wagon around the hospital, nurses take a picture and send it to Nieves.

    Elli's Riley wagon

    One day, the grieving mom was lost in a memory of her little girl, and just then her phone dinged. It was a message from a nurse sending her a photo of Elli’s wagon.

    “Elli always lets me know that she’s here.”

    This will be the second holiday season without her daughter, but Nieves still counts her blessings.

    “I am grateful that I got one of each holiday with her. And the support I’ve gotten from Riley has been absolutely amazing.”

    ]]>
    https://www.rileychildrens.org/connections/his-heart-is-special-and-so-is-he His heart is special and so is he 2021-11-11T09:11:00-05:00 2022-05-02T09:56:06-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Jed and Dorie Medler were anxious. Who wouldn’t be? At that moment, their little boy was undergoing open-heart surgery down the hall from where they waited at Riley Hospital for Children.

    “He’s the strong one. I’m the emotional one,” Dorie said of her husband, who was explaining in pretty good detail what Dr. Jeremy Herrmann was doing to fix their son’s heart on that Tuesday morning two weeks ago.

    “Dr. Herrmann is going to build a wall inside his heart with a little hole in the center to equalize pressure between the chambers, then reroute the blood flow,” Jed said.

    Josiah Medler

    Josiah Medler was born Nov. 6, 2018, with multiple heart defects – dextrocardia, pulmonary atresia and double inlet left ventricle with transposition of the great arteries.

    As renowned and now retired Riley heart surgeon Dr. John Brown put it to the couple when he met them before Josiah’s birth: “Your baby has a strong beating heart but some very bad plumbing that we have to fix.”

    THREE STAGES OF REPAIR

    Josiah is the first child for Jed and Dorie, who live in southern Illinois, and he has been a regular at Riley in his three years of life. When they are not at Riley, the family has received constant support from the hospital’s pediatric cardiology home-monitoring program, headed by nurse practitioner Dana Hartman.

    On this day, Josiah was having the last of a three-stage surgery to repair his heart.

    Up until now, Dr. Brown was the one taking the lead on the surgeries, with Dr. Herrmann at his side. In the past three years, the Medlers have gotten to know and trust Dr. Herrmann just like they did Dr. Brown.

    “It’s strange with Dr. Brown not being here, but with Dr. Herrmann being by his side and participating in Josiah’s procedures, I have no concern at all,” Dorie said, pausing while she wrote a letter to her son to help capture some of her feelings from this day.

    Josiah Medler

    “I am so happy he’s here for these kids. The bedside manner, the intelligence and the way he genuinely cares about the parents and the kids makes him even more unique,” she said. “They chose the perfect person to fill the shoes of Dr. Brown.”

    “YOU GOTTA BE BRAVE”

    Still, sending your toddler into surgery is tough for any parent.

    “He did OK this morning,” Dorie said, though Jed reminded her that Josiah yelled for him as he clutched his stuffed Spiderman when the surgery team was walking him back to surgery.

    “We explained to him that they are going to give you a mask that will smell like strawberries – he remembers that from the last time – and they’re going to put Paw Patrol on, and you are going to take a nap,” Dorie said.

    “When you wake up, you’re going to have some ouchies, but you just sleep until you feel better. You gotta be brave,” she told him.

    “Brave?” he replied, shakily.

    It will come as no surprise to hear that Josiah was not the only one shedding tears that morning.

    “He’s the bravest little thing I’ve ever seen,” his mom said. “These kids are miracles. They’re stronger than I am.”

    As she and her husband waited for word from the surgery team, other family members, who weren’t able to come up on the floor, stood vigil outside the hospital, keeping in close contact with Jed and Dorie.

    MEMORIES OF LOSS

    Dorie lost her dad a year ago, and grief still washes over her in waves. She remembers how he was there for her after Josiah’s birth, when she slipped into depression and did not think she would ever bring her baby boy home.

    “It was a very rough time, and we were so young,” she said. “But you do eventually leave, and you do go home. We’ve made so many friends here at Riley.”

    A former Riley kid herself as a teen, Dorie met a little boy in the elevator at the hospital the other day who was decked out in “Avengers” gear with his mom by his side. In conversation, she learned that the boy was being treated for Chiari malformation, the same thing she had as a youth.

    When the boy told her he was scared, she told him she had the same surgery when she was a kid, and it worked.

    “You be brave. You’ll be alright,” she told him.

    “I have never met anyone else with that condition until that elevator ride,” she said, still stunned.

    That’s why even though it’s hard to come to the hospital, “it’s amazing at the same time,” she said. “These people here are saving all these kids and I’m so glad. Years ago, they wouldn’t have survived.”

    SURGERY IS COMPLETE

    Hours later, Josiah was out of surgery and in recovery. Later that day, he was moved to the cardiovascular intensive care unit at Riley to continue his recovery.

    Josiah Medler

    Dr. Herrmann explained that his young patient was born with his heart underdeveloped on the right side, so the three surgeries performed in the first three years of life help improve its function. The most recent procedure Josiah had is called the Fontan, during which the surgeon reroutes blood flow from the lower body to the lungs by connecting the inferior vena cava to the pulmonary artery.

    Josiah’s case was a little trickier, Dr. Herrmann said, because the boy’s heart is rotated in the opposite position, but all went well.

    When we caught up with the family three days later, Josiah was riding a pink buggy outside his room with all of his wires and monitors stuffed into the car’s front end.

    The boy with the beautiful smile was not smiling then – he was a little groggy from his medications – but to see him up and about three days post-op thrilled his parents and his care team.

    “I’m really impressed with how well he has adapted after surgery,” Jed said. “This little guy takes it like a champ.”

    TO INFINITY AND BEYOND

    Josiah had a special visitor on the Friday before Halloween. Buzz Lightyear, aka Gil Peri, new president of Riley Children’s Health, popped in to see the little boy when he heard about his love for “Toy Story.”

    Josiah Medler

    Josiah was excited to see Buzz, but he did have one question: “Where’s Woody?”

    As for what’s next in Josiah’s health journey, Dr. Herrmann said he may do well for several decades, but a heart transplant is a possibility at some point due to the long-term effects of the Fontan circulation.

    “We are still learning how these patients fare over time, and there are many factors that can affect that possibility. Hopefully, he can continue to do well and get back to being a kid and riding his Big Wheel at home.”

    And that’s exactly what Josiah did.

    Josiah Medler

    On Halloween, five days after his surgery and feeling back to his old self, Josiah said peace out to Riley and returned home to find some new wheels waiting for him – a Spiderman Big Wheel.

    Just what the doctor ordered.

    Previous stories:

    “Being a heart parent is a privilege, but sometimes it feels like a curse” - In honor of Congenital Heart Defect Awareness Week, one young mom pours out her feelings about the ups and downs of raising a heart baby.

    ]]>
    https://www.rileychildrens.org/connections/a-little-poke-a-big-relief A little poke, a big relief 2021-11-10T07:57:00-05:00 2022-04-11T14:31:14-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    The kids felt victorious. Their parents felt relieved. And all it took was a shot in the arm.

    IU Health leaders, physicians and other team members lined up to get their kids vaccinated against the COVID-19 virus over the past few days.

    The smaller-dose Pfizer vaccine was approved for children ages 5-11 last week. Riley Hospital for Children at IU Health and its primary care offices received their first allotments of the vaccine mid-week.

    Kids vaccinated against the COVID-19 virus

    “There’s nothing more important than my kids’ health,” Riley Children’s Health President Gil Peri said as he held his son Ari’s hand before the 7-year-old received his shot. “We want to do our part to end the pandemic. We feel good to know that we are giving them every chance to stay healthy by getting them vaccinated.”

    Nearby, Dr. Sarah Bosslet was joined by her son Bram, 7, as he got his first shot. Dr. Bosslet, a pediatrician at Riley’s Georgetown Road primary care offices, and her husband, Dr. Gabriel Bosslet, have four children, all of whom have now been vaccinated.

    Kids vaccinated against the COVID-19 virus

    “All of my kids, as soon as they’ve been able to get the vaccine, they want it,” she said. “They just want life back to normal.”

    The two-part vaccine for younger kids, which is one-third the dose of the adult Pfizer vaccine, is impressive in its efficacy, she said.

    “It works so well with so few side effects, I’m actually extremely excited … about its ability to protect us.”

    Alison Isenhour works at IU Health Methodist Hospital and has two kids, 16-year-old Adam and 9-year-old Lauren. Adam, a cancer survivor, was vaccinated in the spring. Lauren’s turn finally came Monday at a Walgreen’s in Brownsburg.

    Kids vaccinated against the COVID-19 virus

    She chose to get her shot in her left arm and sailed through the brief appointment, Isenhour said, grateful that her entire family is now vaccinated and that Adam is more protected.

    “Lauren told the lady at the clinic that now she could have other fully vaccinated kids to our home. She’s never been able to go to or have friends to the house because of cancer, then COVID,” Isenhour said.

    Bram, Ari and Lauren are among 28 million children in the United States newly eligible for the vaccine to prevent the most serious cases of COVID, a disease that has killed more than 755,000 people in the U.S. and 5 million around the world.

    While the virus is considerably less deadly in children (700-plus youth in the country have died), that reality does nothing to ease the pain of a parent who has lost their child to the disease or who has seen a child suffer its sometimes debilitating effects.

    Bram Bosslet was eager to join his older siblings in getting the protection the vaccine offers, his mom said, noting he is a very social child and is ready to return to his normal activities.

    Dr. James Wood, an infectious disease specialist at Riley, was able to get an appointment for his two children, ages 5 and 7, at the Fishers Health Department last Wednesday, the first day the vaccine was available.

    Kids vaccinated against the COVID-19 virus

    “From my standpoint, it is the best thing we can do for our kids to protect them,” he said. “It is still rare that kids get very sick and hospitalized, but every time I see a kid in the ICU … I just think about if they’d only been vaccinated, we almost certainly wouldn’t be in this position.

    “Although rare events are rare,” Dr. Wood added, “when they happen to your child, it’s real. Seeing those kids, seeing those parents, thinking that this was preventable, it’s heartbreaking.”

    Kids vaccinated against the COVID-19 virus

    The physicians and other team members who lined up to get their kids vaccinated hope their example gives confidence to parents who might be on the fence about the vaccine.

    Meanwhile, Dr. Bosslett encourages anyone who needs more information to go to a reliable source, most likely their physician, to ask questions. And she recommends this website.

    Riley will also host several COVID-19 clinics for kids ages 5-11 on Saturdays in November and December. Find the full schedule and additional details here.

    Riley will also partner with The Children’s Museum of Indianapolis for a vaccine clinic at the museum, 3000 N. Meridian St., from 4 to 8 p.m. Dec. 2. Advance registration is not required.

    To make an appointment for the pediatric vaccine, contact your child’s pediatrician, or go to ourshot.in.gov.

    ]]>
    https://www.rileychildrens.org/connections/leading-with-their-heart-in-jordan Leading with their heart in Jordan 2021-11-04T08:41:00-04:00 2022-04-04T10:33:40-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    It was March 2020 when Dr. Mark Turrentine and his team of Riley Hospital for Children clinicians last embarked on a medical mission trip across the globe.

    No one knew then that it would be nearly two years before they would return to Amman, Jordan, as the COVID-19 pandemic held the world in its grip, changing life as we knew it.

    But finally, the stars aligned, and after a couple of false starts, the Riley team returned to Jordan in late October, where they operated on a dozen children with life-threatening congenital heart defects.

    “It was very exciting to go back,” said critical care physician Riad Lutfi, who has participated in several Riley/Rotary mission trips with partners Gift of Life Amman, Chain of Hope, Gift of Life International, The Josh Lindblom Foundation and the Rotary Club of Greenfield, Indiana.

    “We weren’t sure what to expect with COVID. Whether the nurses we worked with would be there, how many COVID patients they had, what kind of support we would have, but it was all better than expected,” Dr. Lutfi said.

    Dr. Turrentine, who has made more than two dozen medical mission trips to the Middle Eastern country and many others, said in an earlier interview that he feels a sense of responsibility to these children, despite never having met them. If not for his team, they might not have access to lifesaving care.

    “I know that 80 to 90 percent of these kids will never get to surgery if we don’t take a team there,” he said. “There is such a demand and there are so few opportunities for them to get access to surgical care.”

    Riley team prepares for surgery

    The dozen children he and his team treated on this trip are just a fraction of those who need help.

    “It’s incredible the volume of kids over there who need heart surgery,” the surgeon said pre-pandemic.

    That’s why he rarely takes personal time off anymore. His “vacations” are spent caring for kids a world away from home.

    “For me, I feel it’s selfish to have time off and not go operate on a group of kids, because I know that every trip we don’t make, there’s 10, 12, 14 kids who may never get operated on,” he said in a previous interview. “That’s the way it has evolved.”

    The resources to care for these children are limited, a reality that Dr. Lutfi understands. A native of Damascus, Syria, he has been on several medical mission trips to neighboring Jordan with Dr. Turrentine.

    War and political turmoil have caused endless suffering for the people in Syria, especially the children.

    Two of the patients the team operated on last week in Jordan were Syrian children, Dr. Lutfi said, including a little boy who had waited 19 months for the Riley clinicians to return to complete his corrective surgery for tetralogy of fallot (a rare condition caused by a combination of four heart defects present at birth).

    “We operated on him in March 2020 (placing a central shunt), and he was waiting for his completion all this time,” the physician said. “I can’t imagine what the family has gone through.”

    Yousef reads a book in Riley Hospital for Children

    Yousef, now 2, came through the surgery and is recovering. What was difficult for Dr. Lutfi to see, however, was the effect that ongoing violence in Syria has had on the child.

    “You can see the war-torn effect in him. I turned down the light at night, wanting him to sleep and help his heart rate go down after surgery. Instead, he screamed in the dark,” Dr. Lutfi said.

    “He was in the dark for two years of his life in Syria, he wanted some light. It’s striking to me to see these kids grow up without electricity in a country with a fair amount of resources.”

    COVID concerns and scheduling issues reduced the number of Riley team members who traveled to Jordan this year. Besides Drs. Turrentine and Lutfi, members of the group were CVICU nurses Sheila Rocchio and Heather Dornbusch and operating room nurse practitioner Brittany Mote.

    ]]>
    https://www.rileychildrens.org/connections/pfizer-vaccine-for-kids-arrives-at-riley Pfizer vaccine for kids arrives at Riley 2021-11-03T12:31:00-04:00 2022-03-28T15:23:50-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    The tiny vials with the orange label are the latest warriors in the fight against COVID-19, and the first prized shipment arrived this morning at Riley Hospital for Children at IU Health.

    The Centers for Disease Control gave the final OK Tuesday night for the child-sized dose of the Pfizer vaccine to be given to kids ages 5-11. This recommendation comes after the FDA approved the vaccine last week.

    Pfizer COVID-19 Vaccine

    Heather Cody, project manager for pharmacy at Riley, unpacked the 300 doses that arrived at the Downtown Indianapolis hospital and placed them carefully in Olaf, the department’s deep freezer, which protects the temperature-sensitive vaccine.

    The 300 doses are contained in three small boxes (10 vials per box with 10 doses per vial) that were tucked safely into voluminous packaging and kept cold with dry ice.

    Cody unpacks the pediatric vaccines

    For Cody, unpacking the pediatric vaccine is another high point in the past year. Last December, when the first Pfizer vaccine for adults rolled out, she and a team of people were on hand for the first shipments.

    This is just as exciting.

    “We’ve been anxiously awaiting this. It’s super exciting because it’s for peds, and it’s the first,” she said. “We want to get as many doses into arms as possible.”

    Michael McGregory, Riley’s director of pharmacy, said vaccinating 5- to 11-year-olds is “an important next step in ending the pandemic.”

    Alison Isenhour can’t wait to get her 9-year-old daughter, Lauren, vaccinated. She found plenty of appointments available on the Walgreens website. Lauren will get her first dose Monday after school at a Walgreens near their home in Brownsburg.

    “Lauren is very excited to be able to get the vaccine,” Isenhour said. “Not only to protect herself but others, especially her brother Adam.”

    Adam, 16, is a cancer survivor. He was vaccinated in the spring.

    Isenhour, who works as a mammography technician at IU Health Methodist Hospital, said she knows the technology and the science that has been put into the development of the vaccine.

    Still, she said, she would be lying if she said she wasn’t a little nervous.

    “I’m about as anxious as I was with any shot, vaccine or medication they’ve gotten since birth. We want the utmost protection for them, and I believe this vaccine benefit outweighs the risk.”

    While children are less likely to become seriously ill with COVID if they contract it, nearly 700 have died from the virus since last year. Riley saw a big uptick in pediatric patients with the virus during the peak of the Delta variant spread over the past few months.

    Of those who have contracted the disease or been exposed to it, a small percentage have been diagnosed with MIS-C (multisystem inflammatory syndrome in children), which can lead to inflammation of the heart, lungs, kidneys, brain, eyes and GI system.

    Pfizer Bio-Tech COVID-19 Vaccines

    Parents who are interested in getting their children vaccinated should contact their pediatrician. Shots also will be available to children who are inpatient at Riley or who are being seen in the outpatient clinic. They also will be available at the retail pharmacy in the Riley Outpatient Center on Thursdays and Fridays.

    Go to ourshot.in.gov for the latest information on where the pediatric Pfizer COVID-19 vaccine is being offered.

    This is the first pediatric COVID vaccine for ages 5-11 authorized for use in the U.S. The vaccine is one-third the dose of the adult vaccine, and children will get two injections given 21 days apart.

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/she-is-the-heart-and-soul-of-the-burn-team She is the “heart and soul” of the burn team 2021-11-02T08:55:00-04:00 2022-09-02T09:36:49-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Madeline Zieger doesn’t like the spotlight, but the spotlight found her Friday morning on the burn unit at Riley Hospital for Children.

    Zieger’s colleagues in the Riley Burn Center joined the physician assistant for a celebratory breakfast while she received the IU Health Physicians Values Leadership Award.

    For three decades, Zieger has been providing care at Riley on a unit that often sees the worst injuries imaginable. She is “the heart and soul of the team,” said Dr. Brett Hartman, medical director of the unit.

    Judy Coleman, chief financial officer for IU Health Physicians, presented the crystal award to Zieger, who was joined by her husband and son at the celebration.

    Zieger receives the crystal award

    The award celebrates team members who demonstrate extraordinary dedication to the IU Health mission and values of team, purpose, compassion and excellence both at work and in the community.

    “Thank you to the burn team for submitting this nomination,” Coleman said. “Reading through it, I would love to be on your team.”

    Nurse Christopher Swift said since his first day on the job five years ago, Zieger has stood out as “that person everybody looks to for wisdom.”

    “She is Incredible,” he said. “She makes the team for us. We all know it, and we all treasure her. We are all extremely excited that she is finally being recognized for her dedication to our children in the Riley Burn Center.”

    Belinda Frazee, manager of clinical operations, agrees.

    “Madeline is always that consistent voice for us. We so love and appreciate her. She is an amazing human being.”

    For Zieger, the award is a recognition of hard work over the years, but it’s also recognition of the team she is part of, she said.

    “I’m one member of the team, but without everybody, we don’t have a functioning unit.”

    In the end, it is a family, she said.

    “We all work well together, and it’s a privilege to be part of it.”

    Nurse Milly Jennings and child life specialist Caitlin Dougherty agree on one other thing about Zieger – she is an excellent teacher.

    “She is a safe place to keep asking questions,” said Jennings, who appreciates that Zieger is always willing to share knowledge, yet also has a good sense of humor.

    “I look up to her. I want to be like her.”

    Dougherty says Zieger is the glue that holds the team together.

    “I know that if I have a question about what’s going on with a patient that will help me do my job better, I can go to her, ask her a question, she’ll explain it and not think twice about helping me out to do my job too,” Dougherty said.

    “I really appreciate her as a team player and a person as well.”

    ]]>
    https://www.rileychildrens.org/connections/this-halloween-two-families-are-giving-thanks-and-giving-back This Halloween, two families are giving thanks and giving back 2021-10-31T11:41:00-04:00 2022-03-28T13:48:17-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Will DesJean had been at Riley Hospital for Children for just a couple of days last October when he received a Halloween bag filled with goodies from a local family wanting to give back.

    It was the beginning of fall break last year when Will, then 8, was diagnosed with osteosarcoma in his left leg. His parents, Chris and Stacy (a former Riley nurse), were still absorbing the devastating news when they were touched by the unexpected gift.

    Turns out, the family knew the gift-givers.

    Kim and Matt Lyon and their kids, Piper and Brooklynn, were on the receiving end of many acts of kindness themselves after their daughter Piper was diagnosed with Burkitt’s lymphoma. Then 5, the little girl underwent months of treatment at Riley.

    Piper holds up her Halloween bags

    Piper, now 9, and her family have teamed up with friends to pack and deliver Halloween bags to Riley every year since. It’s part of Halloween 4 Heroes, an outreach project launched when Piper was sick.

    “We received one of her bags last year when we were here,” said Stacy, who actually coached Kim in cross-country at Franklin Central High School many years ago.

    “When Piper got sick, we followed their journey, and Kim reached out to us when she heard that Will was sick.”

    In what Kim described as a “full-circle moment,” the DesJean family, including Will and his two sisters, joined the Halloween 4 Heroes squad in a packing party last weekend, stuffing Halloween bags with toys, books and crafts.

    The DesJean family smiles next to their Halloween bags

    In all, 260 bags were packed and delivered to Riley Hospital last week to be distributed to patients by child life specialists.

    Riley Children’s Health President Gil Peri was even on hand to greet Kim and her crew and thank them for the donation, a gesture that she appreciated.

    “It was nice to hear that he knew about us and our project, and they seemed really excited to be receiving the bags again this year,” said Kim, who has worked with friend and supporter Andrea Arnold to expand the project.

    Will, now 9, is learning to walk again after orthopedic surgeon Dr. Christopher Collier removed much of his femur to root out the cancer last year, replacing the leg bone with donor bone. The boy’s chemotherapy ended in June, but a scan in September found a new tumor in one lung.

    Riley pediatric surgeon Dr. Alan Ladd removed the small lung tumor last month. No chemo was needed because there was no evidence that the cancer had spread.

    “So now we just watch and hold our breath,” Stacy said.

    Will smiles for a photo

    Meanwhile, Will is doing remarkably well, his mom said. He returned to school this year after missing most of last year, and he is regaining his strength, thanks to physical therapy.

    The third-grader likes to fish and play video games with his friends, a lifesaver during COVID.

    Dr. Melissa Bear is Will’s oncologist.

    “We love her,” Stacy said. “All of our team is just amazing. I can’t say enough good things about them all.”

    That’s why this year she wanted to be a part of the Halloween bag giveaway.

    “We love to pay it forward to other families who are going through something similar.”

    She’s thankful that tonight for Halloween, Will won’t be spending it in the hospital. He’ll be out trick-or-treating, dressed as Theodore from The Chipmunks.

    ]]>
    https://www.rileychildrens.org/connections/covid-vaccine-for-younger-kids-could-be-available-next-week COVID vaccine for younger kids could be available next week 2021-10-28T09:54:00-04:00 2022-04-04T10:31:26-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    As a physician and a parent, Dr. Sarah Bosslett couldn’t be more pleased with this week’s news that the Pfizer COVID-19 vaccine for kids ages 5-11 is so close to receiving emergency use authorization from the FDA.

    Her youngest child and 28 million other children in that age range around the country will have access to a kid-sized dose of the vaccine that has proven remarkably effective at curbing serious disease and death in adults.

    An FDA advisory panel voted Tuesday to accept data that shows the smaller dose is safe and 90.7% effective in preventing infection in the 5-11 age group. The regulatory agency and the CDC are expected to approve it within the next few days, opening the door for the vaccine to be available next week at hospitals, pediatricians’ offices, health clinics and pharmacies.

    Dr. Bosslett, a pediatrician with Riley Children’s Health at the Georgetown Road office on the northwest side of Indianapolis, says it can’t come soon enough.

    She and her husband have four children. The older two, both 15, were vaccinated when approval was granted for the 12- to 17-year-old age group to receive the two-part shot in May.

    The couple’s younger daughter couldn’t wait to get her shot when she turned 12 recently. Unfortunately, she woke up sick on the morning of her birthday and tested positive for COVID. She was pretty sick for several days but recovered, her mom said, and has since been vaccinated.

    That leaves the youngest, 7-year-old Bram, who is ready for his turn.

    “WHEN CAN I GET MY COVID SHOT?”

    “All of my kids, as soon as they’ve been able to get the vaccine, they want it.” Dr. Bosslet said. “They just want life back to normal. They want to see their friends, they want to do overnights. They want all of that back.”

    And they don’t want to miss anymore school, she said, noting the two younger kids have missed nearly three weeks of school this year, despite a mask mandate being in place in their Pike Township schools.

    “Even my 7-year-old is like, ‘When can I get my COVID shot? I don’t want to wear a mask anymore. I just want this to be over.’”

    Like Bram, everyone wants this to be over.

    Dr. James Wood, an infectious disease specialist at Riley Hospital in Downtown Indianapolis, has seen the toll the virus has taken on his pediatric patients up close. The vaccine can prevent unnecessary pain and suffering, he said.

    Wood family photo

    “From my standpoint, it is the best thing we can do for kids to protect them. It is still rare that kids get very sick and hospitalized with COVID, but every time I see a kid in the ICU, which in the last few weeks has been many, I just think that if they’d only been vaccinated, we almost certainly wouldn’t be in this position.”

    Although serious infection in kids might be rare, he said, “when it happens to your child, it’s real.”

    “Seeing those kids, seeing those parents, and thinking that this was preventable, it’s heartbreaking,” the physician and father said.

    Dr. Wood and his wife have two children, ages 5 and 7. They’ve spoken to the kids about the importance of the upcoming shot.

    “Although they’re not loving the idea of getting a needle in the arm, they are well aware and ready to go,” he said.

    He is so confident in the vaccine, he signed his kids up for a clinical trial in Cincinnati when it was in the testing stage. They didn’t get in to the trial then, but now, “We’re gonna get in line as soon as we can.”

    COVID FATIGUE

    Dr. Bosslett, Dr. Wood and their colleagues in pediatric medicine understand the fatigue parents feel over COVID. They feel it too. The masks, the testing, the quarantining, the missed days of school and work. And, of course, the worry that every sniffle is the start of COVID.

    “It’s been a slog. People are just emotionally spent and tired,” Dr. Bosslett said.

    She worries that too many parents will choose not to get their child vaccinated. Some are uneasy, and some are unwilling.

    It’s those parents who might be persuaded when given accurate information from trusted sources that she and her colleagues hope to reach.

    Many of the parents who come to her, perhaps when their child is already sick, just have questions, she said.

    “Honestly, sometimes they just need me to sit in there while their child gets the vaccine so they feel better about it. They’re just nervous.”

    Even though widespread use of mRNA (messenger ribonucleic acid) vaccines (Pfizer and Moderna) is new, the technology has been studied for decades, according to HealthyChildren.org. They do not contain any live or dead parts of the virus.

    Dr. Bosslett encourages anyone who needs more information to go to a reliable source, most likely their physician, to ask questions. And she steers them to this trusted website.

    REACHING THOSE WHO WILL LISTEN

    Getting the vaccine approved is one thing, Dr. Wood said. Getting people to take it is the next big hurdle. That’s why he and his colleagues work so hard to understand why people are hesitant.

    “We’ve spoken with folks who have dealt with vaccine hesitancy before COVID, trying to understand the best way to approach families and parents,” he said. “The bottom line is there is not a one-size-fits-all approach to talking to families. Everybody’s coming at this from a different perspective, with different information.”

    The people who need good information and who are willing to listen are the people he believes he can reach.

    “With so much misinformation out there, our role is really to provide the science and the good data and give it to people in an understandable and digestible form,” he said. “We need to understand what folks are worried about and then address those worries.”

    Still, he believes at least half of parents of eligible kids will adopt a wait-and-see approach. Many won’t consider it at all.

    “Nobody likes to be told they have to do something, but I want people to ask the right questions of the right people and not get their information from Facebook,” Dr. Wood said.

    “The bottom line is, it’s safe and it’s effective. The benefits heavily outweigh any risk,” he said.

    (There have been reports of a small number of people developing mild heart inflammation after receiving the vaccine, though none of the 3,000 kids ages 5-11 in Pfizer’s trial developed that condition.)

    “WE NEED TO GET THIS DONE”

    Dr. Wood said he is excited for his kids to have the protection provided by the vaccine, and he wants the same for all children.

    Wood children smile for school with their backpacks

    The same goes for Dr. Bosslet. That’s why she hopes that she and her peers can reassure parents by getting their own children vaccinated as soon as possible. And even doing it in front of cameras to communicate the sense of urgency they feel.

    “If we don’t model it and we’re not prepared and we don’t show from the get-go that this is important, if we are on our heels, then people are going to see this as not a big deal, not urgent,” she said.

    Instead, she hopes it will resonate with other parents when they see her getting her 7-year-old son vaccinated.

    “Here is my child. I’m vaccinating him, and these are the reasons why,” she said. “I think they need to see that and hear it and know that this isn’t something that you do if you want to. We need to get this done.”

    So, come next week, she hopes to be seeing a crush of parents coming in to get their children a COVID shot. But she is realistic.

    “I don’t know how much more telling it can be that all of the medical people are like, let’s go. We’re trying to get that group in the middle who can be swayed. If we can show them that we think this is important enough that we are having our own children vaccinated, that will help.”

    Riley Hospital and its pediatric physician offices are expected to receive an initial shipment of the vaccine next week, pending FDA authorization. Details on how and where to get your child vaccinated will be announced next week.

    ]]>
    https://www.rileychildrens.org/connections/its-respiratory-care-week-and-riley-rts-are-feeling-the-love It’s Respiratory Care Week, and Riley RTs are feeling the love 2021-10-27T07:51:00-04:00 2022-04-04T10:28:24-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    If ever a group of healthcare workers deserved to be celebrated, it’s respiratory therapists.

    They have been in the thick of the COVID-19 pandemic for the past 20 months now, along with their fellow clinicians, caring for desperately ill patients at a time when the disease was (and still is) a deadly mystery.

    That’s why marking Respiratory Care Week this week at Riley Hospital for Children is a big deal. There are lunches and dinners and snacks, of course, provided by physicians and nurses from different units. There are games, prizes, a photo booth, silent auction and shout-outs posted along the wall leading to the RT offices.

    Diana Meadors in the pediatric intensive care unit at Riley

    Diana Meadors has been a respiratory therapist at Riley for 17 years, the past 13 on the pediatric intensive care unit. She has been in a clinical specialist role, educating and training team members while also providing patient care, since 2010.

    Before that, she worked with adults as an RT in Lafayette for 20 years.

    Kids, she said, are way better.

    “That’s my love,” Meadors said. “I didn’t know that until I started working at Riley. I came here because I needed to work days for my home life, but I found I really love working with the kids.”

    Meadors, who with her wife, Lisa, has four kids and two grandkids, said COVID and other respiratory ailments have hit pediatric patients hard over the past few months.

    “We’ve been busier than ever and not just with COVID. Other viruses have escalated since mask mandates have fallen away,” she said.

    And kids, especially teens, who’ve had COVID have been very sick.

    “It’s a long haul. It takes a toll on them and their families.”

    But pediatric patients are tough, Meadors added. They take what’s thrown at them and they don’t complain.

    “I worked with adults for a long time, and they would complain about their therapy when you’re just trying to get them better. Kids don’t do that.”

    Amanda Worthington is also an acute care clinical specialist at Riley and co-chairs the Aspire committee, which has planned this week’s activities.

    Notes from the nurses and other team members

    The notes from nurses and other team members that are posted in the hallway of the RT offices are a reminder to the team why they do what they do.

    “Thank you for all that you do! You guys are amazing! We wouldn’t be able to do what we do without you,” one Riley colleague wrote.

    “Love seeing your cheerful face! I always learn something new when you’re working. Thank you for spreading your knowledge and always being in good spirits. You rock,” another nurse wrote.

    Worthington kept one note she received previously from a nurse she worked with in the emergency department: “Our RTs are the best ever. They are such team players, and they are always willing to educate myself and others. … They are always willing to joke around with me when time allows and always have my back no matter what.”

    In light of the last year, notes like that mean so much, Worthington said.

    “We are drained. Our acuity is high, our staffing is low, but we still give everything we’ve got to take care of our patients and also our co-workers, our nurses and docs. We do try to be there and support them, like they do for us.”

    The Aspire committee helps raise money throughout the year to plan these special events, as well as supporting asthma camp, working with the Riley Food Pantry for a Thanksgiving food drive and adopting a family to shop for during the holidays.

    For Meadors, the recognition is appreciated, even if she doesn’t care for the spotlight.

    “I like to be behind the scenes,” she said. “But it’s nice when the leadership and physicians and nurses show appreciation for us and what we do. I feel they do appreciate us at Riley. We see that on a daily basis.”

    ]]>
    https://www.rileychildrens.org/connections/he-takes-care-of-avery-like-he-was-his-own-child “He takes care of Avery like he was his own child” 2021-10-26T11:37:00-04:00 2022-03-23T10:00:55-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    From the day he was born seven years ago, Avery Brown has had to fight.

    Fight to breathe. Fight to eat. Fight to be understood.

    It has taken a determined mom and many compassionate doctors to help him through those battles.

    But one physician stands out, not just for his medical expertise but for the relationship he has forged with his young patient.

    Dr. William E. Bennett, a pediatric gastroenterologist at Riley Hospital for Children at IU Health, met up with Avery and his mom, Brittany, in the Simon Family Tower lobby at Riley last week.

    Avery visiting Riley for appointments

    Avery had been at Riley for several appointments the previous day, but he and his mom returned to say hi to Dr. Bennett after spending time with family and before heading back home to New Paris, Indiana, about three hours north of Indianapolis.

    “I’ve been taking care of him since he was a baby,” Dr. Bennett said. “He’s definitely my cutest patient.”

    CUTE AND BRAVE

    He might say that about all his patients, just like he teases his four kids at home, but Avery is indeed special, the physician said.

    “He has a lot of complex things going on, but one awesome thing about Avery is he’s always had a really good attitude,” Dr. Bennett said as the boy hugged a statue of former Riley physician-in-chief Richard Schreiner in the Riley lobby, before moving on to sit next to a statue of Hoosier poet James Whitcomb Riley, the hospital’s namesake.

    “He has always been really brave about all the stuff we put him through. That makes a big difference. And he has a good relationship with all of his doctors,” Dr. Bennett said.

    When Avery was born in northern Indiana, six to seven weeks before his due date, he wasn’t breathing, his mom said. Once his respiratory emergency was under control, he was transferred to a Fort Wayne hospital, where he remained in the NICU for about a month.

    During that time, he suffered several episodes of rapid heart rate and had a hole in his heart that resolved on its own in time.

    FAILURE TO THRIVE

    Avery was discharged, but his problems were just beginning. He was referred to Riley for failure to thrive, which was directly related to another problem he was having – cyclic vomiting.

    The newborn was vomiting multiple times every day, barely able to keep anything in his stomach. An older brother, 2 at the time, had the same condition, though not quite as severe, and had a feeding tube.

    Avery was in and out of the hospital much of that first year of life. But at about 14 months, an MRI ordered by Dr. Bennett finally offered a whisper of an answer: obstructive hydrocephalus.

    The disorder is a blockage that prevents the flow of cerebrospinal fluid between ventricles in the brain. As Dr. Bennett explains, there are as many nerves in the gastrointestinal tract as there are in the spinal cord and numerous connections between the brain and the GI tract. Basically, Avery was suffering from migraines of the head and stomach, his mom said.

    Avery smiles at his mother both wearing masks

    The MRI indicated increased intracranial pressure, which required surgery to place a shunt in Avery’s brain to drain off excess fluid.

    “Dr. Bennett has been such a huge blessing,” Brittany Brown said, while physician and patient chatted in the background seated at a piano. “We’d been through every test possible, and no one could diagnose him. He was not developing, he was getting worse, vomiting mass amounts all the time.”

    It went on for months, she said, but it felt like years.

    Until that diagnosis and the surgery that followed.

    “That was a huge piece to Avery’s care,” she said.

    A LONG SEVEN YEARS

    The build-up of fluid in his brain before the shunt was placed resulted in some developmental delays, mostly memory and retention issues, Brittany said. She and her husband, Alan, who have three other children, used sign language with Avery for the first two years of his life, but after he got tubes in his ears and had speech therapy, he picked up language quickly.

    “Now to speak to him, he can converse like he’s 18,” she laughed.

    The second-grader, who also suffers from asthma and epilepsy, has “silent seizures” and migraines that can make school difficult.

    “It’s been one thing after another,” Brittany said. “It’s been a long seven years for him and for me.”

    That’s why the relationship with Dr. Bennett and the rest of Avery’s team, which includes neurology, developmental peds, psychiatry, neuropsychology, ophthalmology, sleep medicine, hematology, pulmonology, dental and genetics, is so important.

    “We keep as many specialists as we can at Riley,” Brittany said. “Having as many people under one roof as possible is definitely beneficial. And we think so highly of Dr. Bennett. It feels like he has become family, and he takes care of Avery like he was his own child.”

    FOCUS ON THE PATIENT

    Being a physician is a two-way street, Dr. Bennett says, something he has taken more to heart as he has gained experience.

    “A lot of people see healthcare as this one-directional thing – you go to the doctor and they provide a service. I’ve found that I like my job a lot more if I’m getting feedback from patients and families that what I’m doing matters to them,” he said. “That motivates you to work hard, to focus on what they need rather than what the last patient needed.”

    Avery is an example of a patient who requires a care team who thinks outside the box to keep his symptoms under control, the doctor said.

    “He’s a complex little boy, but I think we’ve made a lot of progress with lots of different things and kept him from having to have more surgeries, more procedures. He’s been doing relatively well the past couple of years.”

    His combination of problems is unique enough that it’s hard to know what the next year or the next five years will bring, the physician said. But getting his vomiting under control with weekly IV fluid infusions at a hospital closer to home has made a big difference by reducing trips to the emergency department for dehydration.

    Avery rides an ATV

    Meanwhile, Avery continues to live an active life, his mom said. He loves swimming and sports – participating in basketball camps and flag football – and he gets a kick out of riding ATVs with his siblings.

    “Avery is full of life. He does not let his medical stuff hold him back,” Brittany said. “Sometimes I have to be the mean mom and say you can’t do that, but he doesn’t have a lot of restrictions.”

    LISTENING TO PARENTS

    And that’s the whole point of his treatment, Dr. Bennett said. “The goal of all of this is so he’ll have a great quality of life.”

    It’s something the physician keeps in mind with all of his patients. But to do that, he needs to know them as individuals.

    “You can’t meet with someone one time and understand what their needs are,” he said. “You have to develop a relationship.”

    That’s why he listened closely to Brittany’s concerns when she told him years ago that something was not right with her son. Although skeptical, he ordered that MRI that gave them some answers.

    Brittany, Avery, and Dr. Bennett pose for a photo

    “As doctors, we can learn from that,” he said. “If mom is really worried, sometimes it’s OK to reassure her, but a lot of times you have to say I’m going to dive deeper into this to see what’s going on. That’s where building a relationship helps. I need to trust her opinion.

    “We know the disease process, and she knows her son,” he added. “That makes it more of a partnership, when you approach it like that. If you put that together, it results in the best outcomes.”

    Physicians like Dr. Bennett are what get Brittany and Alan through the tough days.

    “It’s exhausting, but it helps having that connection and being able to know without a doubt that Avery is going to get whatever care he needs,” Brittany said. “Having a good team of doctors has made all the difference in the world.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/mad-dash-to-the-ed-saves-little-boy Mad dash to the ED saves little boy 2021-10-24T09:40:00-04:00 2022-04-11T14:30:00-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Dr. Ben Petty sees a lot of things as an emergency department physician at IU Health West Hospital, but this was different.

    Rushing toward him was a fellow doctor wearing a protective gown, mask and face shield and holding tight to a baby boy.

    Murphy Chew

    The child in his arms was cyanotic, Dr. Petty observed, pale and listless. His lips were blue. He was breathing, but clearly struggling.

    “Honestly, I don’t think he could have been breathing on his own much longer,” Dr. Petty said. “He got here in the nick of time.”

    Dr. Jason Cosgrove is a pediatrician with offices at IU Health West. When Kalina Chew brought her 1-year-old son in to see him that Tuesday morning last month, he knew immediately the child was in distress.

    Chew had been watching her son closely since the previous night when he had a runny nose. By morning, he was worse. He had a well-child visit scheduled that day with Dr. Cosgrove, but she wondered if she should take Murphy directly to Riley Hospital for Children, where he had been seen a month earlier for a bronchial infection.

    “RAN HIM TO THE ER”

    Dr. Cosgrove was available to see her immediately, the pediatrician’s office told her, so rather than risk waiting in an emergency department, she drove her son to IU Health West, much closer to her Brownsburg home.

    “That’s what I did, and I’m grateful for that,” Chew said. “Dr. Cosgrove was able to give him a steroid shot right then, and he scooped him up and ran him to the ER because his oxygen level was in the 60s.”

    The entire visit in the pediatrician’s office took just a few minutes, Dr. Cosgrove said. He took one look at Murphy, had him swabbed for COVID and flu (both negative) and had a nurse check his oxygen saturation levels – twice. The first reading came back in the 70s, the next in the 60s. A normal oxygen level is 95 or higher.

    The doctor gave him a shot of Decadron to help his breathing and had his nurses call down to the ED to let them know he was bringing a sick baby their way.

    “He did not look good. I knew he was pretty sick,” Dr. Cosgrove said. “I just picked him up and headed down there. They met me on the way, and they were ready to roll.”

    At a normal pace, the walk from his office on the west side of the hospital to the emergency department on the east side might take about 3 minutes. He went a lot faster this time.

    “This was the first time I had walked a patient to the ER ever,” he said. “And they were well-prepared.”

    TEAM JUMPED INTO ACTION

    Dr. Petty estimates barely a minute passed between the time he got the call that a sick child was on his way and Dr. Cosgrove’s arrival with Murphy in his arms.

    “That was the most notable thing – Dr. Cosgrove carrying the child down from his clinic to the emergency department,” Dr. Petty said. “I can’t recall ever seeing that happen.”

    Meanwhile, Murphy’s mom was in a state of shock but took a photo of Dr. Cosgrove carrying her son to the ED because she wasn’t sure her husband, Tad, who was home with their older son, Clark, would believe what was happening in that moment.

    She fought to stay calm.

    “I knew not to panic yet, but when we got to the ER, I think at one point there were four physicians in the room and I don’t even know how many nurses. It felt like there was one nurse just for me, to keep me calm.”

    Murphy Chew

    Dr. Petty had readied his ED team and asked respiratory therapist Brenda Joyce to jump in. They put Murphy on high-flow oxygen through a nasal canula and prepared his mom for the possibility of him being intubated and put on a ventilator.

    “The baby was lethargic and pale and his lips were blue,” said Joyce, who couldn’t help but flash back to the time her then 6-week-old grandson had a respiratory virus and had to be intubated. “She got him to the doctor just in time really. It could have been a lot worse.”

    MUSIC CALMS HIM

    At one point, Murphy’s mom asked if she could climb up next to her son and play a song on her phone that calms him. Murphy’s middle name is Joel, a nod to singer Billy Joel, whose 1977 tune “Scenes From an Italian Restaurant” later wafted through the emergency room.

    Murphy Chew

    “That doesn’t happen very often either,” Dr. Petty said, marveling at Chew’s level-headedness. “That was instrumental in allowing us to get an IV in and start him on oxygen.”

    But talk of a ventilator scared the young mom.

    “Of course, over the last couple years with COVID, you hear of someone going on a ventilator and not coming off, so that’s where my head went,” Chew said. “Thankfully, he responded well to the oxygen and albuterol.”

    Dr. Petty said it is his job to prepare for the worst in the ED. He was grateful that it didn’t come to that.

    “Everyone was so calm, worked so well together, got him on oxygen and stabilized him,” he said, before calling for Murphy to be transported to Riley via IU Health LifeLine.

    “We were thrilled to see that he did really well,” Dr. Petty added. “I counsel parents to use their intuition because they know when something is off. Her mom instinct was right on that day.”

    “PRAYING FOR THE BEST”

    There was no room in the ambulance for Chew, so she followed in her car. That’s when she allowed herself to fall apart a little, realizing how close she came to losing her little boy.

    “I had mentally prepared that our Lord was potentially calling our baby home, while accepting that I had done everything I could in that moment and praying for the best.”

    Much of that morning was a blur to Chew, who said she finally caught her breath once they got to Riley and her baby’s oxygen levels stayed up.

    Murphy Chew

    The diagnosis of asthma that came later at Riley flooded Chew and her husband with relief, but she was also confused.

    “I have asthma, but it’s very mild and I didn’t know I had it until college,” she said. “I don’t have to treat it, I just avoid triggers. But this is a learning curve for me because so many things could set off his asthma – carpet, pets, allergies, weather changes, a lot of things out of your control.”

    Murphy, who now sees pulmonologist Dr. Evans Machogu with Riley Allergy and Asthma, was on the PICU at Riley for two days before being moved to the pulmonary unit. During that time, Chew attended asthma education classes and learned how to give her son breathing treatments.

    “By then, he was doing so much better. It was about educating me to keep him healthy,” she said. “In the class, they said 10 people in the U.S. die every day from asthma. I just didn’t know it could be that serious.”

    PARENTS: TRUST YOUR INSTINCTS

    Chew said under normal circumstances she would not be sharing her family’s health scare publicly, but she felt this was too important to keep quiet.

    “We are grateful to have a diagnosis so we can help him. Even if this helps one person, then good came from it.”

    She encourages other parents to trust their instincts.

    Murphy Chew

    “If you feel something is wrong, don’t wait. And advocate for your child,” she said, as a happy, healthy Murphy squealed and babbled in the background.

    “We had a great experience at Riley. I’m just so grateful,” she said. “I feel very fortunate that we have such an awesome children’s hospital within 30 minutes of us.”

    Murphy, whose first name is a nod to the sports bar Murphy’s Bleachers across from Wrigley Field in Chicago, is smart, active and happy today, his mom said. He loves balls, Hot Wheels and salmon and likes to watch big brother Clark play baseball.

    He has settled into a routine of twice-daily breathing treatments while listening to his favorite Billy Joel tune.

    “We’re still learning what triggers it (an asthma attack) for him,” Chew said, “but we feel fortunate that we have access to such great care.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/podcast-maternity-matters-music-therapy-helps-families-find-joy-in-the-nicu PODCAST: Maternity Matters: Music therapy helps families find joy in the NICU 2021-10-18T10:03:00-04:00 2022-02-16T12:03:00-05:00

    Listen to more Maternity Matters episodes.

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    https://www.rileychildrens.org/connections/swimmer-defies-the-odds-nine-months-after-he-nearly-died Swimmer defies the odds nine months after he nearly died 2021-10-14T12:38:00-04:00 2022-03-07T12:12:55-05:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Christa Hendrickson has made the three-hour trip to Riley Hospital for Children in Indianapolis so often that her car GPS began marking Riley as “home.”

    For her and son Zane, however, home is Boonville, Indiana, a small town near Evansville that has wrapped its arms around the family ever since Zane collapsed on his high school pool deck in January and nearly died.

    Zane, a champion swimmer, suffered a heart attack and stroke and would not have survived had it not been for the heroic efforts of a team of medical personnel spanning three hospitals.

    By his mom’s count, his heart actually stopped nine times. She was with her son in the emergency department of Deaconess Hospital in Evansville when he coded the first time. When his heart stopped, hers nearly did too.

    Collaboration among physicians, therapists, nurses and other clinicians at Riley, Deaconess and IU Health Methodist Hospital ensured that Zane made it safely to Riley while on ECMO (heart-lung bypass).

    Open-heart surgery performed by Dr. Mark Turrentine repaired a heart defect that had gone undiagnosed Zane’s whole life. But the multiple cardiac arrests had done plenty of damage, leaving his endocardial layer scarred and reducing the heart’s ability to pump blood.

    After a grueling 2½-month recovery at Riley, Zane went home to Boonville to continue therapy on an outpatient basis and try to reclaim the life he knew before Jan. 7, 2021.

    Zane at outpatient therapy

    “I WILL FOREVER BE GRATEFUL”

    At the six-month mark on July 7, Christa posted on Facebook about the day Zane’s life – and hers – changed forever.

    “Six months since I heard the words, ‘You need to get in here right away; your son is very sick and will likely go on a ventilator.’ Six months since seeing the medical team in the Emergency Department perform CPR on my son. Six months since hearing the words, ‘This is a fatal event.’ Six months since watching the doctors and nurses work tirelessly for hours to keep him alive.”

    And then: “Six months since doctors and staff at three different hospitals collaborated to coordinate a life-saving event that had never been done before and for which I will forever be grateful.”

    Now nine months after his ordeal began, Zane, 16, has accomplished a lot. Over the summer, he worked, got his driver’s license and completed his interrupted sophomore year of high school, maintaining a 4.0 GPA. In August, he returned to in-person classes for his junior year.

    Zane celebrates his 16th birthday

    There were bumps along the way – a readmission to Riley in late March as his damaged heart struggled to heal, the realization that his swimming career was on hold, and a future that looked far different than he had imagined.

    But a recent trip back to Riley for a follow-up echocardiogram and other tests reminded him how far he has come.

    “It might not have been the path we planned, and the detour hasn’t always been the easiest to navigate, but we are still moving forward and forging new pathways,” Christa said.

    Last week’s visit got off to a great start when Zane and his mom learned that cardiac sonographer Nancy Kehlenbrink, aka “Fancy Nancy,” would be doing his ECHO.

    Kehlenbrink’s quick wit and compassion make her a favorite among her patients and their parents.

    “Every time I see him, I am reminded of the amazing miracle I was blessed to witness over time,” Kehlenbrink said.

    She will never forget the day Zane first became aware of his surroundings at Riley. She was doing his ECHO and was startled but delighted when he began talking to her.

    “The next thing you know, his mom walked into the room and he proceeded to scold her because he could not get hold of her by phone.”

    With a stern look and voice, Kehlenbrink recalled, he asked his mom where she had been.

    “Christa and I both teared up because we knew the extent of the miracle we were witnessing in that moment.”

    Zane with Riley Children's Health Employee

    CONTINUING TO HEAL

    Drs. Adam Kean and John Parent continue to follow Zane, monitoring his heart function. Talk of a heart transplant has been set aside for the moment, but it remains a very real possibility as Zane is being treated for heart failure, a chronic condition in which the heart doesn’t pump blood as well as it should.

    The ECHO showed Zane’s heart was operating at about the same level as it had been two months previously.

    “We didn’t get the improvement we had hoped to see, but his EF (ejection fraction) held steady at 30-32%,” Christa said.

    Zane’s energy level is decent, considering all he has gone through, his mom said, but Dr. Parent is not comfortable with him resuming swimming, at least not yet.

    So, Zane has turned his focus toward coaching.

    “He just completed all of his coursework to get certified with Indiana Swimming/USA Swimming,” Christa said.

    And perhaps the best news, all things considered, he has been asked by his high school to be an assistant swim coach.

    Zane at school

    One more thing: His English class was given the assignment to write persuasive essays to encourage classmates to donate to their favorite charities. Zane’s was chosen, and the class donated funds to Riley.

    “Today, Zane’s heart is scarred and functioning at about half what it should be, but he is alive,” his mom wrote. “His left hand doesn’t work as it should, but he is alive. … He is able to go to school and work and hang out with friends. He is able to play games and laugh and be witty. He is able to hug his mom and roll his eyes at her for constantly nagging him. … He is alive.”

    Submitted and file photos

    For more information about the beginning of Zane's journey, check out our first article here: https://www.rileychildrens.org...

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    https://www.rileychildrens.org/connections/i-was-scared-he-was-going-to-die “I was scared he was going to die” 2021-10-12T08:00:00-04:00 2022-03-25T14:00:44-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    The anguish in Charlie Krallman’s voice is obvious. He’s looking at his 17-month-old son in a hospital bed, connected to a ventilator that helps him breathe.

    This same child was perfectly healthy just three months ago. Braxton Krallman was babbling, laughing, playing and trying to walk.

    “One night he was fine, acting like a normal toddler, and the next day he was pretty much dying,” Krallman said, while his wife, Katrina, prepared to start her last 24-hour care session with Braxton at Riley Hospital for Children before the family could go home.

    And home is pretty far away. The family, which also includes 8-year-old Lillian, lives in Woodburn, Indiana, about two hours northeast of Indianapolis. That has made it difficult for the Krallmans to always be at their son’s bedside.

    “We’d be here every day if I didn’t have to work and the world would just stop for me, but it won’t,” the young father said.

    “HE COULDN’T MOVE”

    Their world stopped that day when they realized their little boy was critically ill.

    “He couldn’t move his arms or legs or anything from the neck down at first,” Braxton’s dad said. “I was scared he was going to die. It happened so fast.”

    He couldn’t even breathe on his own.

    Braxton, Charlie, and Katrina, at Riley Children's Health

    But if the past three months have taught Charlie and Katrina anything, it’s that their son is a fighter.

    Braxton was rushed to a hospital in Fort Wayne in July with what doctors at first thought was a virus that was making him weak and listless.

    He was taken to another Fort Wayne hospital, then transferred to Riley, where he was treated for transverse myelitis, an inflammation of the spinal cord that can lead to paralysis.

    INTENSE REHAB

    After a month of lifesaving treatment, Braxton was moved to Riley’s inpatient rehab unit, where a team of physicians and therapists have worked with him for six weeks to help him regain some strength and mobility.

    Benjamin Schrock is a physician assistant on the unit who has seen Braxton power through many challenges since his arrival.

    “He has made great progress from a medical standpoint and a therapy standpoint,” Schrock said. “When he first came over to rehab, he was completely dependent on a ventilator and now we’ve been able to get him off for trials for much of the day and breathing on his own.”

    That’s a tribute to the interdisciplinary collaboration (think nursing, respiratory therapy, pulmonary/home vent team, physicians, advanced practice providers, and speech, physical and occupational therapy) that it took to successfully admit, care for and discharge the rehab unit’s first patient who required full-time vent support, said Kathleen Osborn, program manager for the Pediatric Inpatient Rehabilitation Program.

    Braxton at Riley Children's Health

    Braxton was weak overall, not moving a lot and had significant tightness in his little body when he first moved over to rehab, Schrock said.

    But last week, his therapy team reported that he was moving his extremities more and was starting to grab things with his little fingers.

    “He is stronger overall and more purposeful. He is looking at us, laughing and smiling,” Schrock said.

    And chattering too, thanks to a valve placed over his trach that lets sound come out of his mouth.

    BEAUTIFUL BABBLING

    As a speech pathologist, Sarah Sternasty has spent lots of what she calls quality time with Braxton since the end of August. Among the things she has been able to help with is fitting her young patient with a speaking valve that fits over his trach.

    “Kids who are on ventilators or have trachs typically are unable to use their voice,” she said. “There isn’t air passing through their vocal folds (cords). So early on, we started Braxton on a speaking valve. He breathes in through the trach, but when he breathes out, it closes and lets air pass through and lets his sweet little voice come out.”

    He has not stopped babbling and yelling ever since, except when he’s asleep.

    “He has so much attitude,” she said.

    “His spirit is still there,” Braxton’s dad agreed, describing how his son loves Trolls, Baby Shark, beatboxing and listening to his musician dad play the guitar.

    That voice and that spirit have brought joy to the team caring for Braxton.

    “He is very bubbly, talkative, usually smiling and laughing,” Schrock said. “He makes our day brighter when we see him.”

    Despite the trauma of his illness, Braxton is on target with his language skills, Sternasty said.

    “From a communication standpoint, he has really blossomed.”

    And while early on, he wasn’t able to take anything by mouth, a swallow study has cleared him to eat pureed food and yogurt, while receiving more nutrition via a feeding tube for now.

    “With his respiratory issues, he was at very high risk for swallowing deficits,” she said. “The fact that he is going home on a plan where he can eat some food by mouth is huge.”

    SIMILAR TO SPINAL CORD INJURY

    Still, transverse myelitis, which interrupts the messages that the spinal cord nerves send throughout the body, is a life-changing illness, Schrock said. He describes it as similar to a spinal cord injury, without the trauma of an accident. It was likely due to an infection that spread to the spinal cord and caused inflammation.

    Landing at Riley, however, gave him access to the level of expertise he needed quickly, both in terms of treatment and rehabilitation, Schrock said.

    “With these types of injuries, getting to rehab quickly, getting intensive therapy as soon as possible, is really important. I think this gives him the best chance of recovery.”

    Occupational therapist Lesly Solares stepped in to help care for Braxton a few weeks ago when he was entirely vent-dependent. By transitioning him to a trach collar, which is placed over his breathing tube and through which humidified oxygen passes, his strength returned more quickly, along with his gross and fine motor skills.

    Now he is using his hands to grasp toys, sitting with assistance and laughing, a sound that soothes his parents.

    ENERGY IS RETURNING

    Through the hard work of the medical team, the pulmonary team and speech therapy, he was able to get even stronger in his breathing so he was able to tolerate being on the trach collar, said Riley physical therapist Lindsay Schaefer.

    She saw considerable progress in her little patient’s ability to sit and hold his head up for short periods of time.

    “We also saw more energy and willingness to participate in play,” she said.

    Some of that energy came from seeing other kids in the therapy gym, which was something Schaefer and her therapy colleagues knew was important.

    “We went through vent training so we could put him on a portable vent and get him out of his room,” Schaefer said.

    Then they combined his PT and OT sessions so he could get more out of the time allotted.

    “That’s when we saw him interacting more, watching the other kids throwing a ball,” she said. “We problem-solved to make it the most beneficial for him. Seeing him get stronger in all aspects and seeing as a whole team how we made him stronger was pretty great.”

    “GOD GETS US THROUGH”

    Braxton was taking a power nap last week while his mom was getting ready to give him a bath with support from his therapy team, but the family was looking forward to discharge two days later.

    He will still require intensive home care and therapy, but none of that scares his dad.

    Braxton in a hospital bed

    “He’s my son, and I love him. Nothing intimidates me that involves taking care of him. I would walk through hell fire if that’s what I had to do to make sure he is OK.”

    Time will tell how much function returns to Braxton. A diagnosis of transverse myelitis typically comes with this prognosis: A third of patients have no return of function, a third regain some skills with modifications, and a third made a full recovery.

    The Krallmans obviously are hopeful that Braxton falls into the latter category, but they take it all day by day.

    “God gets us through,” Katrina said. “That and seeing the smile on his face. That’s what keeps us going.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/podcast-maternity-matters-the-covid-19-vaccine-and-pregnancy PODCAST: Maternity Matters - The COVID-19 vaccine and pregnancy 2021-10-11T08:27:00-04:00 2021-11-10T10:56:28-05:00

    Listen to more Maternity Matters episodes.

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    https://www.rileychildrens.org/connections/riley-rallies-around-afghan-children-in-need-of-care Riley rallies around Afghan children in need of care 2021-10-07T14:36:00-04:00 2022-03-21T11:53:19-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    In a playroom on the eighth floor of Riley Hospital for Children, a man and a boy sit on a table facing the window. They look out at the unfamiliar city below them and talk quietly in a language few here understand.

    They could be any father and son seeking a reprieve from the stress of a hospital room. While they may feel like strangers in a strange land, they have been welcomed here.

    Around them, they see the face of hope.

    Riley team member puts on a medical mask

    That’s what team members at Riley want to be for this family and so many others who have come from Afghanistan to start a new life in a new country.

    It doesn’t matter that they don’t speak the same language. A smile, a reassuring touch, a gesture of welcome says what words cannot.

    “You are safe.” “We want to help.”

    That has been IU Health’s guiding principle ever since more than 6,000 Afghan men, women and children who fled their country after the Taliban takeover were temporarily resettled at a military base about 40 miles south of Indianapolis last month.

    Camp Atterbury, a training base for the Indiana National Guard, is serving as one of nine temporary refugee resettlement posts in the United States.

    DOING GOOD WORK

    Dr. Michele Saysana, chief quality and safety officer for IU Health and a pediatric hospitalist at Riley, has been coordinating Riley and IU Health’s response to the Afghans’ needs.

    Dr. Michele Saysana smiling next to Dr. Chan Saysana

    She comes to this work from both a professional and a personal interest. Her husband is Dr. Chan Saysana, a pediatric anesthesiologist at Riley and a former refugee from Laos. He and his siblings and parents fled that war-ravaged country in 1976 and came to America.

    Dr. Saysana serves on the board of Exodus Refugee Immigration in Indianapolis, which has a long history of welcoming refugees to Central Indiana.

    Because of that association, she knew that a large number of Afghan refugees would be arriving at Camp Atterbury, but she didn’t know that nearly half of them would be children. In addition, there were at least 100 pregnant women.

    One of the first things she was able to arrange, with help from IU Health team members Kieran Tansy, Matt Simpson and Joe Meyer, was the donation of an ultrasound machine to the camp so doctors there could do prenatal ultrasounds.

    Beyond that, it became evident rather quickly that many children needed the kind of care only Riley could provide.

    So, Riley leadership and team members stepped up to provide that care.

    “I think it’s a cool example of how we just go and do good work,” said Dr. Saysana. “Whoever is in front of us we help, no matter what. That’s what medicine is all about; that’s what we’re supposed to do.”

    It’s also a way to support the military, she said, adding that she has a brother in the service, so it’s important to her on many levels.

    “THIS IS WHY I WORK WHERE I WORK”

    Dr. Elizabeth Weinstein, pediatric emergency medicine division chief, has the same philosophy. She led Riley’s response when it came to emergency medicine.

    “In short order, it became clear that while the military was doing a really extraordinary job building these processes from the ground up, there are reasons that a children’s hospital exists,” she said.

    Several children were brought to the ED beginning Labor Day weekend with emergent needs, Dr. Weinstein said. Some were suffering from dehydration and malnourishment, while others had longstanding chronic illnesses or congenital abnormalities, requiring inpatient care.

    “We were happy to have those kids and those families with us, but we also realized quickly that we didn’t have much insight into where they were coming from – what we were discharging them home to – and we needed a better sense of the camp, their process and what we could provide to families.”

    They worked with camp personnel to smooth out some of those processes, while continuing to do their best for the Afghan children.

    “It is meaningful for us to take care of any child and family who needs us here in Indiana, whether they’ve been here for generations or they just arrived a couple of weeks ago,” she said.

    “No matter how beaten down and tired we get with all the things happening on the healthcare front, there are these moments when you just very clearly think to yourself, this is why I work where I work,” Dr. Weinstein said.

    SPEAKING FROM THE HEART

    Dr. Rachel Peterson, a Riley hospitalist, has been seeing patients admitted to Riley for a host of illnesses. One of the obvious challenges for her and others has been the language barrier.

    Sometimes Camp Atterbury has sent interpreters with families, but often the hospital relies on phone and video-based online interpreting services to translate Pashto and the variety of dialects the Afghan people speak.

    Written instructions on how to use Martti

    Martti, an interpreter on wheels, has been a crucial member of the team, Dr. Peterson said. The video language service can translate in real time.

    “We would be lost without it,” she said.

    Like others on the team though, she has learned a few words from her patients and their parents. The one she hears the most?

    Manana – thank you.

    “Caring for these patients has been so wonderful,” she said. “We have a global health doctor on our team, Dr. Laura Ruhl, who runs the pediatric portion of our global health department in Kenya. She works here part of the year on our hospitalist team. With her help we’ve been able to address some refugee care issues that I didn’t know as much about.”

    Dr. Peterson said she is glad to be in a position to help the Afghan people.

    “I’ve felt honored to help. It’s the right thing to do.”

    She can’t shake the images she saw on television in August of Afghans desperate to board planes in Kabul, traveling with just the clothes on their backs and their personal documents.

    “To meet them in person, it gives me chills to talk about it,” she said. “It’s been such a privilege to carry this out at Riley, to show our Hoosier hospitality to people who are escaping a very scary situation.”

    Dr. Peterson conversing with a team member

    Despite the burdens of the pandemic, which have seemed never-ending to many in healthcare, Dr. Peterson said this humanitarian mission feels different.

    “We can welcome them, we can take care of those who need it, and we can partner with our teams. It’s been cool to see,” she said.

    STEPPING UP

    Advanced practice provider Stayce Woodburn spends most of her time caring for cancer patients, but she stepped up to help when Riley hospitalists and ED team members were overwhelmed by the number of patients.

    “I can tell you that the patients and their families have been so kind and so gracious to all the care providers here,” Woodburn said last week.

    “For me, it’s just been a really good experience, to be able to help these families through a difficult situation and navigate clinically through whatever is going on and empower them to help get their child better and reunite them with their families at camp.”

    The past 19 months have taught healthcare workers to be flexible and resilient. Caring for the Afghan people requires those same skills, as well as a healthy dose of humility, Woodburn said.

    Dr. Saysana agrees. Despite the challenges, the work has been a privilege, she said.

    “It’s what we do when we know there are people in need. We want them to have a better life.”

    Humans caring for other humans, Woodburn said. That’s what it’s all about. That’s what she and her colleagues are called to do, whether it’s COVID or cancer or the chaos of mass evacuations from a troubled country.

    “You can’t plan for when things happen, but when people need you, that’s when you have to step up. It makes me even more proud to work where we work.”

    MEMORIES OF ANOTHER CHILD

    Robin Wilson is a case manager on 8 East who has been busy coordinating resources for families who are inpatient and arranging progression of care as they move on to new homes away from the camp.

    Many years ago, Wilson took care of an Afghan child who came to Riley for heart surgery as part of a humanitarian mission with Rotary International.

    “I was really glad to be a part of it,” she said, recalling that the boy’s father spoke English, so she learned a great deal about the Afghan culture. She was struck by the man’s generosity and kindness.

    Wilson sees those same traits in the Afghan guests today, when they let down their guard. “They’ve been through so much.”

    TEAM APPROACH

    Dr. Weinstein, who said the ED was seeing anywhere from four to 14 Afghan children a day last month, credits the entire Riley team for coming together to help.

    From Dr. Saysana, whom she describes as “top-notch,” to Riley Chief Medical Officer Dr. Elaine Cox to Dr. John Christenson and his infectious disease team … she could go on.

    “We are learning as we go, but we are grateful for our partners,” the emergency department physician said. “Care management has been extraordinary. Our pharmacy team has been amazing. It really has been a collective extraordinary effort to make sure we are zigging and zagging with all the new challenges associated with the care we can provide for these families.”

    In a pediatric emergency department, it’s expected that healthcare workers will be seeing children and families who are struggling amid extremely challenging circumstances. In fact, it’s one of the things that makes pediatric emergency medicine special, Dr. Weinstein said, the opportunity to help families in those moments.

    Riley’s Afghan guests, however, have survived experiences that not many can relate to, she said.

    As for that language barrier?

    “I think there are things you can do that don’t necessarily need an interpreter,” Dr. Weinstein said. “I think people feel it when you are welcoming. I think they feel kindness and compassion during a time that I’m sure is chaotic and frightening.

    “Those are things that come through, at least I hope they do. I hope that is an environment we create for all of our families. It shouldn’t matter what language you speak.”

    It’s pretty simple, she said, when she looks into the eyes of Afghan moms and dads.

    “I see parents who love their children and want what is best for them.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/covid-nearly-killed-their-son-it-was-a-life-and-death-situation COVID-19 nearly killed their son: “It was a life and death situation” 2021-10-05T13:34:00-04:00 2021-10-20T16:01:00-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    As they look at their son lying in a hospital bed, Josh and Kristi Braziel can’t believe the way their lives have been turned upside down in the past three weeks.

    But the fear they faced early on has been replaced by a feeling of anxious calm. That’s because Mason Braziel is finally recovering after a terrifying battle with COVID-19.

    “It was a life and death situation,” Josh Braziel said about his son Mason’s condition.

    One day, the high school senior was celebrating his 18th birthday with friends and going to see his beloved Chicago Cubs beat the Minnesota Twins. Two weeks later, he had machines keeping him alive.

    HE’S A TOUGH GUY

    The Braziels, who live in Crawfordsville, thought Mason had a fairly mild case of COVID at first. He rarely gets sick, they said, and never complains.

    “A tough guy,” his dad said. “He doesn’t even do the fake sick thing to get out of school.”

    When Mason, who was unvaccinated against the virus, started complaining over Labor Day weekend that he was achy, feverish and couldn’t taste or smell, Kristi knew it was likely COVID, and a rapid test confirmed it.

    The self-taught guitar player and Cubs fanatic (he wears a Cubs shirt pretty much every day) quarantined in his bedroom, where he had access to a separate bathroom, and his parents dropped food at his door.

    “He was just riding it out,” said Kristi, who at that time didn’t know anyone in her circle who had become seriously ill with the virus. “The doctor said the fever could last seven to 10 days. On the 11th day, I had him take his temperature again.”

    It was still elevated, and he had a stubborn cough, so their physician recommended he get an outpatient X-ray at the hospital in Crawfordsville.

    HIS CONDITION DETERIORATED

    The short walk from the car to the hospital doors sent his oxygen levels plunging, and things began going south very quickly, Kristi said.

    A hospital physician suggested Mason was a “happy hypoxic” – describing a patient suffering dangerously low oxygen saturation levels but who doesn’t appear to be in respiratory distress.

    He was hooked up to a BiPAP machine to help his breathing, then transferred via Crawfordsville Fire Department to Riley Hospital for Children in Indianapolis, a decision that likely saved his life because Riley has an ECMO program, a form of heart/lung bypass for the sickest patients that not every hospital has.

    It was a whirlwind for his parents, but they are counting their blessings now that their son has been at Riley for three weeks.

    “The way this hit him so hard was kind of shocking, but it (COVID) is unpredictable,” Josh said.

    For the first few days at Riley, Mason was stable. His parents thought maybe he was getting better.

    “Then things just went to pot in a hurry,” Josh said.

    ECMO SAVED HIS LIFE

    Mason’s condition worsened, and he was intubated and placed on a ventilator, a desperate attempt to save his life. But within hours, it became clear that the damage to his lungs was worsening.

    ECMO clinician Paula Miller explains what happened next.

    “He was still not oxygenating well, not improving,” Miller said. “They were seeing damage to his lungs and air was leaking out of his lungs to surrounding tissue. You can feel that air when you palpate their skin. You can feel it popping under the skin.”

    Mason’s lung tissue was becoming so damaged by how much support he was receiving from the ventilator that his care team, including Dr. Rachel Gahagen and Dr. Colin Rogerson, worried it might be irreversible.

    The decision to move Mason to ECMO support was made quickly. There was no time to waste.

    On Thursday evening, Sept. 23, Miller hooked Mason up to the ECMO circuit, which immediately began pumping and oxygenating his blood outside his body, allowing his heart and lungs to rest.

    “I told his parents he’s OK. That’s the first thing they wanted to hear. He went on smoothly and stabilized right away,” Miller said. “The relief on their faces was just incredible. I can’t imagine what they went through just to get him to that point.”

    Had Mason needed to be transported to Riley when he was that critical, the results could have been far different, Miller said.

    As hard as it was to see their son hooked up to so many machines, Josh and Kristi were the tiniest bit relieved in that moment. They had heard the stories about patients going on ventilators and never waking up. ECMO at least offered them more hope.

    “You look at somebody hooked up to it and it looks pretty rough, but you could tell he was more at peace because he wasn’t struggling to breathe. It was doing it for him,” Josh said.

    “As overwhelming as that room was, it was so peaceful to see him with normal breathing and some color in his face,” Kristi added. “We know it saved his life, literally. That and all the prayers.”

    “WE LANDED AT THE RIGHT PLACE”

    Mason improved each day, and after just four days, he was ready to come off the life support machine.

    Two days later, his breathing tube was removed, and this week he came off all oxygen support and was able to get out of bed and sit in a chair, then walk from the chair to the door and back with the help of an occupational therapist.

    “AH-mazing!”

    That’s how his mom put it in a text message today after seeing her son walk.

    While he still has a long recovery ahead, his progress fills them with hope, pride and gratitude for his Riley team.

    “From the moment we checked in here, from the doctors, to the nurses, the therapists, the ECMO team, the people at the front desk, every person here has been great,” Josh said. “We landed at the right place.”

    Mason likely will move over to Riley’s inpatient rehab unit to regain his strength and mobility before going home.

    “We’re just so thankful,” Kristi said. “We don’t care how long it takes. It just feels like we can exhale now.”

    GET THE SHOT

    After seeing what the virus did to their son, Josh and Kristi encourage everyone to get the COVID vaccine.

    “You don’t want to see anybody going through what he is going through,” Josh said. “There are other people out there more important than us. Whether we think we need the vaccine or want it, it’s more about the other people.”

    Miller, Mason’s ECMO clinician, has stopped in his room the past couple of nights and is thrilled with how well he is doing.

    “He looks amazing.”

    Mason is one of the lucky ones, she said, considering how ill he was. Not all survive.

    “It’s wonderful to see a patient do this well … but all the patients we’ve seen who are this sick are not vaccinated,” Miller said, adding she hopes his story helps raise awareness of the importance of getting the shot.

    “It’s just heartbreaking to know that it could have been prevented.”

    The Pfizer vaccine is approved for people ages 12 and older. Approval for a lower-dose vaccine for children 5-11 is expected yet this year.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/podcast-maternity-matters-when-its-not-just-the-baby-blues-after-giving-birth PODCAST: Maternity Matters - When it's not just the 'baby blues' after giving birth 2021-10-04T09:02:00-04:00 2021-10-04T09:04:30-04:00

    Listen to more Maternity Matters episodes.

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    https://www.rileychildrens.org/connections/shout-out-to-rehab-services-for-their-teamwork Shout out to Rehab Services for their teamwork 2021-10-03T16:52:00-04:00 2021-10-03T17:00:11-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Brenda Hinton wants to brag for a minute. Not about herself, but about her team at Riley Hospital for Children.

    In response to a story that published last week on the IU Health and Riley social media pages, Hinton, pediatric inpatient manager for Rehabilitation Services, wanted to give her team a big shout out.

    The team, which consists of occupational and physical therapists, speech and language pathologists, therapeutic recreation specialists and rehabilitation technicians, has pulled together through the demands of the pandemic and other staffing challenges, Hinton said.

    “They have continued to work together to promote quality and excellence in care for all of our patients, in addition to preparing for the opening of the Maternity Tower by gaining certifications in care for our neonatal population,” she said.

    The team also expanded its knowledge and skills to provide care and address rehabilitations needs of vent-dependent patients on the rehab unit.

    “This team of talented and skilled therapists continued to provide top-notch care for our acute patients, adjusting their practice to accommodate the new needs of patients affected by COVID-19,” Hinton said.

    The outpatient team also went above and beyond during this trying time, she added.

    “During the reduction of outpatient services, this team pulled together to support not only our department but several other departments. We had therapists who assisted EVS in cleaning rooms and spaces. Our staff assisted in the scrub distribution centers. Some of our outpatient staff trained in inpatient care to assist their fellow inpatient team members,” she said.

    “We are very proud of our hardworking, dedicated and committed staff in the Rehab Services department. We want to recognize and thank them for embodying all of the values of IU Health – Purpose, Excellence, Compassion and Team. They continue to shine through these tough times.”

    Also deserving recognition are Ryan Cardinal, director; Angela Dixon, outpatient rehab manager; Mandy Weinzierl, audiology manager; and Lindsey Griggs, office manager.

    If you would like to spotlight a team or individual who goes above and beyond, email mgilmer1@iuhealth.org

    Photo by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/ecmo-offers-hope-and-peace-to-families ECMO offers hope and peace to families 2021-09-30T15:26:00-04:00 2022-05-02T14:23:44-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Members of the ECMO team at Riley Hospital for Children love the opportunity to help support patients and families who are going through some of the hardest days of their lives.

    Sometimes that support comes in life. Sometimes in death.

    Kathie Ratliff is a nurse who cares for critically ill children, but she is also an ECMO clinician, providing often lifesaving care to those who are out of options.

    Kathie Ratliff talking with a team member at Riley

    ECMO is short for extracorporeal membrane oxygenation. It is basically a life-support system giving a patient’s heart and lungs time to rest and recover from illness or injury.

    The Riley ECMO team, led by clinical manager Gail Hocutt, has supported more than 1,100 patients since the technology was introduced at the hospital in 1987. It is recognized as a Platinum Level Center of Excellence by the Extracorporeal Life Support Organization.

    “This is a last-ditch effort to save a life,” Ratliff said. “I love that opportunity, but sometimes it’s also about giving a family time before they have to say goodbye to their child.”

    When there is no hope for recovery, families are still grateful for the chance to hold their child without tubes obstructing their little one’s face.

    It’s desperately sad, of course, but also a gift to loved ones, Ratliff said.

    “They are so grateful to be able to hold their child,” she said. “We are able to let them see their child’s face. I love the opportunity to give the families that.”

    Penny Eldridge has been an ECMO technician for 25 years. The technology has changed, but the goal is the same – to give patients a chance at life.

    “We have a lot of success stories,” Eldridge said, acknowledging that teamwork and flexibility are crucial to making the program work.

    Nurse and ECMO clinician Allison Allen said apart from supporting patients and families, being part of the ECMO team has helped her form relationships with nurses, physicians and therapists in all three ICUs at Riley – cardiovascular, neonatal and pediatric – where ECMO takes place.

    “I came from the NICU primarily, but it’s a good learning experience to be able to work in all three.”

    Riley can support four to six patients on ECMO at one time, but having to put three on in one night is unusual. That’s what happened to clinician Paula Miller, who works nights.

    “We put three patients on ECMO in one 12-hour shift,” she said, “and it was only possible because of the incredible teamwork of our dedicated Riley staff.”

    Two of those patients survived.

    When it was determined that the third child’s condition was incompatible with life, the team withdrew the ECMO support in consultation with the family.

    “Sadly, not all of our patients survive, but for this family, ECMO gave them time to know and love their precious baby,” Miller said. “Because she was fully supported by ECMO, we were able to take her off of the ventilator and they were able to hold her for hours before we removed ECMO support.”

    Multiple people came together that night to make it the best they could for that family, Hocutt said.

    When the worst happens, particularly in the case of an infant, Miller and her colleagues create special memories for grieving families. Molds are made of a parent’s hands holding a child’s hand or holding tiny feet.

    Molds of a parent's hand holding a child's hand and tiny feet

    “We have incredible bereavement support for our families and have made many memories for them that they will cherish,” said Miller, who started her nursing career at Riley in 1988 and became part of the ECMO team in 1990.

    “Families love them. It means a lot to them to have something like that to take home.”

    Riley’s ECMO team received a Red Shoe Award recently for outstanding contributions to family-centered care, as well as IU Health’s Living the Values Award for Excellence.

    “We have seen so many miracles,” Miller said, adding, “It’s all about the team coming together.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/bringing-mothers-and-babies-together-under-one-riley-roof Bringing mothers and babies together “under one Riley roof” 2021-09-28T13:09:00-04:00 2022-03-23T11:27:55-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    To a person, the sentiment is the same: “It’s been a long time coming.”

    “It” is the new Riley Maternity Tower, which officially opens for business Sunday morning, Nov. 7, at Riley Hospital for Children at IU Health.

    People who’ve been around the Downtown Indianapolis IU Health hospitals for a long time have been waiting for the day when mothers and babies could be together in the same space, even when a newborn or new mom requires specialized or ICU care.

    Riley Maternity Tower grand opening

    “We’ve worked so hard to get to this point,” said Dr. Izlin Lien, medical director of the Neonatal Intensive Care Unit at Riley at IU Health Methodist Hospital, which is moving to the new maternity space at Riley.

    “Especially in the last 18 months with COVID and what it’s done to our unit at Methodist,” she said. “My heart and every health provider’s heart hurts when we have to separate mom and babies right after delivery. That has been the toughest part of our job.”

    ALL UNDER ONE ROOF

    Dr. Laura Haneline, division chief for Neonatal-Perinatal Medicine at Riley, echoes those sentiments.

    “We’re really excited about being able to take care of mothers and babies under one Riley roof,” she said. “Having the NICU and the high-risk deliveries adjacent to the medical and surgical subspecialists they need and need quickly will really be a benefit for those patients.”

    Now, rather than whisking a fragile baby away from its mother at Methodist to be cared for at Riley, both can be cared for in the same space. The same holds true for moms who suffer complications and require specialized care. All of it is available in the new Maternity Tower.

    “For mothers, it’s really hard to be separated from their babies,” Dr. Haneline said. “Sometimes it’s unexpected when a baby needs to be in the NICU and it may be short-term, and sometimes we know prenatally that there are going to be issues. But to have their baby completely separated from them, taken by ambulance and in another building is really, really hard.”

    While many advocated for a space that offered a full complement of women’s health services, the Maternity Tower is a huge advancement in the care of pregnant women and their families, physicians say.

    “You have no idea how excited I am and our NICU team is,” Dr. Haneline said. “It’s almost like coming home. I know a lot of the nurses (labor and delivery/NICU at Methodist) had never really worked at Riley, but over the past several years they’ve started to feel a little more like a Riley team.”

    TEAMWORK

    Even though the two entities at Riley and Methodist were in effect one team, it’s hard to feel like a team when you’re geographically separated, she said. The mile distance from Methodist to Riley might as well have been 50 miles, one physician said.

    Inside Riley Children's Health

    “Being together will facilitate all of our missions, including further development of patient care improvements, research, teaching and sharing of quality improvement initiatives and resources,” said Dr. Haneline, who leads a group of 47 neonatologists and has been on the Riley faculty since 1997.

    Not to mention, it will improve access for babies to the medical and surgical subspecialties they need.

    “The environment itself is going to be so much better for mothers and families,” she said. “We are moving into a new, beautiful unit with single patient rooms, with a dedicated family area where they will have space to store things and a lounge area. That is a big benefit for our families.”

    There are 45 single-patient NICU rooms in the new tower, in addition to two rooming-in rooms and four spaces for observation or short-term admissions. In total, that represents room for 51 babies, Dr. Haneline said. Newborns who need surgery or more critical care will be moved to the adjacent NICU in the Simon Family Tower.

    NICU DOC AND FATHER OF QUADRUPLETS

    Dr. David Boyle, Riley neonatologist and former medical director of the Fetal Center at Riley, knows personally and professionally how important the new Maternity Tower will be for families.

    His wife, Maureen, delivered quadruplets at University Hospital back in 1990, before it was part of the IU Health system. Born at 33 weeks, the quads did not require NICU-level care and were able to stay in the University special-care nursery for a few weeks before they were discharged.

    Today, those quadruplets are healthy, successful adults, two of whom work in the Riley NICU – one as a nurse at Riley North and another as coordinator for the NeuroNICU program Downtown.

    He knows how hard it would have been for his wife to be separated from the babies just after birth if they had needed to be transferred.

    “There are so many times I can remember over the years where a mother has actually left Methodist against medical advice because she wanted to be with her baby,” he said. “We tried many things to help facilitate visitation, but it’s hard.”

    Barbe Hidde, a longtime NICU nurse at Methodist who has been working closely on the Tower project with her colleagues, remembers hearing about the plans when she started work decades ago.

    “At that time, my hiring manager said, ‘Just so you know, there’s a good chance we’ll be moving to Riley next year,’ ” she recalled with a laugh.

    She has been pleased to lead tours of the new tower for the past several months.

    “It’s very exciting to me, it’s finally happening,” she said. “And not only is it happening, it’s a beautiful space, and we’re going to give amazing care to our moms and our babies here. I’m glad I held on long enough to see it happen.”

    Hidde transitioned to working with the Riley Maternity and Newborn Health service line, focused on perinatal levels of care, last year. Once the move is complete, she will return to that work as well as other training responsibilities.

    Change is hard for some, she knows, but the Methodist NICU has been a Riley NICU for several years, so the practices are similar, and the care is the same, she said.

    What’s unique is that in the past, moms who needed specialized care after giving birth were moved to the Methodist ICU. Now, they can be cared for in the new obstetrical ICU in the Maternity Tower.

    “The amount of training that our Maternity Tower teams have been through is incredible,” she said.

    RILEY SEES MANY ADULT PATIENTS

    Of course, Riley has always taken care of babies. But people might be asking how a children’s hospital can take care of adult patients.

    “People don’t realize that there are adult patients cared for at Riley Hospital all the time, whether they’re cardiac patients or cancer patients or cystic fibrosis patients,” said Dr. Boyle, one of a half-dozen neonatologists who staff the Fetal Center outpatient clinics for complex patients.

    “The difference is the type of problems that a mother is likely to have are somewhat unique, but we have had incredible support from our adult colleagues. We will have three OB ICU beds embedded on that second floor. Those beds will be staffed 24-7 by an adult intensivist.”

    In addition, he said, OB nurses are undergoing specialized ICU training to care for moms. Providers are cross-trained in intensive care medicine, as well as obstetric medicine.

    Newly designed intensive care unity

    Dr. Jim Lemons had a vision for a women’s hospital on the Downtown campus decades ago when he first joined the faculty. Even as Simon Family Tower was being planned (the first phase opened 10 years ago), Dr. Lemons was thinking about how the space could be used for a women’s hospital or maternity hospital, said Dr. Boyle, his colleague for 32 years.

    “It was a no-brainer for many of us in pediatrics from the very beginning to do this,” Dr. Lemons said, acknowledging that he was not privy to all of the challenges that may have delayed this day.

    “RIGHT THING TO DO”

    The important thing is that it is happening now. And it is the right thing to do for women and children, he said, reflecting the pre-eminent care delivered by Riley neonatologists and all of the subspecialties in-house.

    “It’s not just the surgeons or the urologists, it’s the ultrasonographers, the electrocardiographers, electroencephalographers, the interventional radiologists, perfusionists, nurses, therapists, the housekeeping person who makes sure the place is spotless,” Dr. Lemons said. “It’s all those people and more who have been living the life of caring for children at Riley. It’s all that family, that village.”

    Inside the Maternity Tower

    And it’s having all of those people together in one space that will encourage even more collaboration and support, which will enhance the experience for patients, he believes.

    “The less tangible aspect is the importance of having our obstetric colleagues in the same space as our neonatologists and all the pediatric subspecialty colleagues,” said the physician, who spearheaded the founding of a Riley mother-baby hospital in Kenya in 2009.

    It has been quite the journey these past months and years as the Maternity Tower has taken shape in Riley’s old NICU space before Simon Family Tower opened.

    Dr. Boyle says the hard work is a credit to so many people – from leadership to nursing staff, supply chain to EVS, IT support to parent groups. The trick was to get everybody on board and rowing in the same direction, he said.

    “I’m just really proud of all these people.”

    NICU medical director Dr. Lien agrees.

    “We have the most excellent nurses and respiratory therapists and physicians, so we already provide great care,” she said. “Now we’ll be doing it all in the same place.”

    Sure, there are anxieties and sadness on the part of some team members who have worked at Methodist their entire careers. But there is excitement too, said Dr. Lien, who gets emotional herself when she thinks about closing the Methodist labor and delivery unit and NICU.

    “We acknowledge all the good work that was done here,” she said. “And we move forward.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/riley-teams-lift-each-other-up-amid-ongoing-health-crisis Hospital teams lift each other up amid ongoing health crisis 2021-09-23T14:33:00-04:00 2022-03-23T10:10:44-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Last year at this time, the cookies, pizza, sidewalk art and good vibes were flowing into our nation’s hospitals daily.

    Communities stepped up to show respect and appreciation for medical workers whose spirits were sagging under the weight of a pandemic that showed no mercy.

    A year later? That pandemic is still raging, hospitals are still in crisis mode, and the heroes of yesterday seem all but forgotten today by many.

    But not by each other.

    Riley Hospital for Children has a culture of caring that runs deep. Not just in the way it cares for its patients, but in how team members care for each other.

    In the past few months, Riley has experienced a surge in pediatric patients, some due to COVID-19, some due to a common respiratory virus called RSV that can be serious in small children, and some due to an increase in traumatic injuries, including gunshots.

    We wanted to give Riley teams a chance to lift each other up and talk about the importance of feeling valued.

    EMERGENCY DEPARTMENT SHOUT-OUTS

    Perhaps nowhere has the increase in patient numbers been felt more acutely than the Emergency Department. Dr. Cory Showalter, director of the ED, and Nettie Wilson, clinical manager for the ED, pulled together this list of shout-outs that goes beyond their department to other specialties:

    Chaplaincy and social work teams: For rounding on families and team members, helping support spiritual and emotional needs during this difficult time.

    Case management: For supplying enormous support with COVID test callbacks and coordinating care of Camp Atterbury guests.

    Riley leadership and transformation team: For helping to navigate operational logistics for ramping up the surge response and providing support to boost physician and nurse staffing to match the increased patient volume and acuity.

    SPA team leadership: For contributing to rounding in the Emergency Department waiting room, helping families as they wait their turn to be seen.

    IU Emergency Medicine incident command team: For supporting ED operational needs at the system level, ensuring the team and patients are well cared for.

    IUH leadership (Missy Hockaday and Brian Kremer): For visiting the ED, rounding and listening to the team’s needs, then helping to bring needed resources.

    Language services and the executive team: For supporting a Spanish interpreter in the evening hours.

    Every EVS worker, unit secretary, tech, medic, social worker, nurse and physician who works in the department: For their dedication to patients and each other.

    And finally, the families of Indiana: Who trust the health of their children to the ED team.

    “A REALLY ROUGH THREE MONTHS”

    The pediatric intensive care unit is another area that has been busier than usual, said service line director Dr. Riad Lutfi, who noted that while the winter of 2020-21 was not as bad as feared at Riley, this summer has made up for that.

    “We had a low census in the winter. Everyone was masked, and we had strict social distancing,” he said. “Things started opening up in the spring and early summer and that was really a game changer, and then the Delta variant came around.”

    The PICU has had nearly double the census from the winter months in July-September, he said.

    “It’s been a really rough three months. We had to have an urgent/emergent plan to care for all these children, so we extended our coverage during the day and night.”

    IU Health’s pay incentives for nurses in particular has been critical to maintaining adequate levels of staffing, he said.

    “It is good to see the system appreciate the need. It is a smart investment.”

    And while the extra money is nice, the nurses he knows are also motivated by wanting to help their patients and team members.

    “Their heart is in the right place,” he said. “When you feel appreciated for what you do, it only adds to the joy of the work.”

    That appreciation extends in other ways too, the critical care physician said, including frequent check-ins and small birthday celebrations.

    “They are small things, but I think small things can help,” he said.

    Dr. Lutfi understands that after 18 months of the pandemic, people are tired of living under restrictions, but he wants those who are not vaccinated to consider the risk they may pose to children who are unprotected.

    Riley staff puts on safety gear

    Riley, like hospitals around the state and country, is seeing a surge in pediatric patients diagnosed with COVID. Most, not all, do well with treatment, but the virus takes a toll on even the healthiest body.

    “It has been tough; everyone is tired for sure. We are wishing we had a little bit of a break, but we’re not sure when,” he said.

    And until that respite comes?

    “We will continue to support each other and be available for sick children in Indiana.”

    “EXTRAORDINARY WORK” IN CVICU

    Heart surgeon Dr. Jeremy Herrmann singles out the cardiovascular nurses at Riley (particularly in the ICU) for their “extraordinary” work, especially over the past few months.

    “Our CVICU has been full or even over the usual capacity on many occasions,” he said. “Carrie Davison manages the CVICU and has been steadfast throughout all these difficult times. I have seen her come in overnight to help her nursing team on several occasions. She truly leads by example.”

    Carrie Davison puts on a safety gear

    The level of dedication and professionalism shown by the nursing team continues to impress him.

    “Everyone has stepped up. Considering that so many hospitals are losing nurses for various reasons, the fact that they retain so many, especially veteran nurses, speaks to the culture of that ICU.”

    From a surgeon’s standpoint, Dr. Herrmann said, the critical care nurse is irreplaceable.

    “You sleep better at night knowing there are good nurses looking after your patient.”

    PUTTING PEOPLE FIRST

    Carrie Davison, whom Dr. Herrmann mentioned above, is clinical manager of the CVICU and leads a team of nearly 80 nurses, six patient care assistants and a unit secretary.

    For her, being a leader means putting people first.

    “I encourage work-life balance,” she said. “I’ve always viewed my job as taking good care of my people so they will in turn do a good job taking care of our patients.

    “When we have good work-life balance, that allows the joy to come out at work and that’s what our families pick up on. They see a team of caregivers here who love their jobs, who are committed to being here.”

    While COVID hasn’t impacted the unit too much, Riley’s reputation as a top pediatric cardiology program (No. 5 in the nation and No. 1 in the region) means business is booming.

    August marked the highest average daily census in the unit’s history, Davison said.

    And, of course, COVID is not just a challenge in the workplace. It adds stressors on the home front, whether that be concerns for at-risk family members, navigating school openings and closings, quarantining or lack of adequate childcare.

    “It has added another layer of complexity to life. We’re all human, and so that impacts us here at work,” she said. “And it’s been going on for so long that it’s starting to wear some of us a little thin.”

    But they encourage and count on each other.

    Patient care techs work together

    “We have a tremendous team approach on the cardiac ICU, and that goes from our physicians to our secretary to our patient care techs to the nursing team and to our surgeons,” Davison said.

    “We all count on each other to deliver excellent care to these patients. I think that when you have that vested interest in each other, it’s natural to care and be compassionate toward each other. It’s natural to try to lift each other up, but it’s also natural to try to have fun and enjoy your time together.”

    Davison is proud of her team’s hard work, sacrifices and professionalism. They know their patients need them, and they need each other. But they’re also needed at home.

    “Because we have that strong team and that compassion for each other, it makes us sad when we can’t be here,” Davison said. “And that wears on us. Those stresses and responsibilities outside of work are real, and that causes internal conflict.”

    GIVE GRACE TO ONE ANOTHER

    Amy Haskamp, clinical nurse specialist for palliative care and hematology/oncology, believes paying attention to self-care is extremely important, as is asking for help and support when you need it.

    “For me, spending time with a young patient who is doing well and laughing certainly does my heart good.”

    Her colleague, nurse practitioner Amy Hatton, said the hospital can be overwhelming these days.

    “I don’t know that I have any insightful tips, other than to give grace to our colleagues and families navigating scary things and assume everyone is doing the very best they are capable of in this time.”

    Erica Branam, a nurse on 8 West, wants to spotlight respiratory therapists as everyday heroes.

    “As pulmonary nurses, we see how vital RTs are,” she said. “In a code or rapid response, THEY are who I want in there over anyone else. Especially with COVID, they are the real front line.”

    "Hometown Heroes" at the Indianapolis Indians game

    The Indianapolis Indians agree. The team recognized those in the profession as Hometown Heroes during a recent baseball game at Victory Field. The event raised money for the Indiana Society of Respiratory Care, of which Beth Summitt, director of respiratory care at Riley, serves as a chapter director.

    “I appreciate the opportunity to highlight the amazing work they do and the significant contribution they make in the lives of our patients and families,” Summitt said.

    “WEAR A MASK AND GET VACCINATED”

    Dr. Jeffrey Raskin, a board-certified pediatric neurosurgeon and director of the movement disorder and surgical epilepsy programs at Riley, acknowledges a tremendous sense of exhaustion among medical providers today.

    “Beneath the exhaustion, behind the bleary eyes, under the stratified PPE, are still professional medical providers from all credentials doing their level best to deliver high-quality care,” he said.

    “Therapists, nurses, hospital workers, doctors and administrators all trying to respond to the most impactful public health crisis in decades. To single out one individual would be disingenuous, because everyone is really working together right now to just not lose our collective minds.”

    What can the public do for him and his colleagues right now?

    His answer is simple. “Wear a mask and get vaccinated.”

    If you want to give a shout out to an individual or a department, email mgilmer1@iuhealth.org and use the subject line "Team Shoutout."

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/seven-year-old-talks-about-life-with-sickle-cell-disease Seven-year-old talks about life with sickle cell disease 2021-09-22T12:05:00-04:00 2022-03-25T13:21:58-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Calina Jones-Mckinzie is ready for her close-up.

    The 7-year-old patient at Riley Hospital for Children strikes a model-like pose – legs crossed and head turned to the side – when she sees the cameras.

    “Action,” she says, beaming as her mother shakes her head nearby and laughs.

    Calina’s personality is almost too big for her body, but her joy is infectious.

    The second-grader is at Riley to see her team of specialists in the sickle cell clinic, a home away from home since she was a newborn.

    Sickle cell disease is an inherited blood disorder that causes red blood cells to become hard and sticky. When they clog up blood vessels, the blood cannot bring oxygen to the body’s tissue. This often results in serious infections, chronic pain and organ damage.

    In the United States, it is estimated that sickle cell disease affects approximately 100,000 Americans and occurs in about one in every 365 Black or African-American births.

    RILEY OFFERS COMPREHENSIVE CARE

    Riley’s Pediatric Sickle Cell Program, the largest in the state, benefits from comprehensive and multidisciplinary care to minimize trips for families and maximize assessments and interventions provided, according to program director Dr. Seethal Jacob.

    “This way they can not only see the sickle cell specialist, but they can also meet with a psychologist, a pulmonologist and a neurologist to address concerns or complications that arise as part of sickle cell disease,” Dr. Jacob said.

    Calina visiting with Dr. Jacob

    Calina and her mom, Jeszma Jones, travel from northern Indiana to see Dr. Jacob and the sickle cell team three to four times a year. That means five to six hours in the car each time, but Jones says the journey is worth it.

    “I absolutely love Riley. And so does Calina. Every time I tell her we are going to Riley, she gets super excited. This morning she woke me at 1 o’clock in the morning ready to go.”

    This visit might have been a little different because Calina knew she was going to be photographed. Dressed in a bright yellow shirt with a unicorn on the front, a white skirt and tennis shoes, she bounds into the exam room full of energy.

    “She’s a character,” her mom says. “Full of life, loves to laugh and to help people.”

    She takes piano and singing lessons, likes to draw and watch old cartoons. And she loves baking with her nana.

    But there’s more.

    PUSHING THROUGH PAIN

    “She’s also very determined. She’s a fighter. When she has a pain episode, she still tries to push through it, which is good but sometimes she tries to push herself a little too much,” Jones said.

    Pain is part of sickle cell disease. It can be debilitating and lead to a host of other complications, but fortunately for Calina, it is manageable for the most part with heat therapy, ibuprofen and drinking lots of water.

    She misses out on some popular childhood activities though, like swimming and playing in the snow because extreme cold and heat can cause her fingers and limbs to swell and pain to flare up.

    She loves to play in the water, so her mom fills up a small wading pool at the home they share with Jones’ mom and lets the sun warm it before Calina can get in.

    When the first snow falls, Calina would love to make a snow angel and a snowman, but special gloves and a snowsuit don’t give her enough protection.

    Calina is also susceptible to colds and viruses, so COVID-19 terrifies her mom.

    “Before COVID, we were already wiping things down, but now we’re triple cautious,” she said. “It is super scary. I really don’t want her to have to go to the hospital. I pray a lot.”

    Jones is vaccinated against the virus, and she can’t wait for her daughter to receive that protection as well.

    “Once they approve it for her age (CDC approval could come by next month), she will definitely be getting the vaccine.”

    “MY LIFE WITH SICKLE CELL”

    Calina is holding court in the exam room before Dr. Jacob comes in.

    “This is my life with sickle cell,” the young patient says as she launches, unprompted, into a narrative about her disease.

    “Well, my life with sickle cell is kind of bad. I don’t like sickle cell, but it’s a part of my body, so I can’t control it. This is my routine,” she continues. “First, the aching pain – every single night and day. It will hurt, literally hurt.”

    When her mom asks her what she does for the pain, she talks about her heating pads, the medicine (ibuprofen) she takes and the water she drinks.

    “I try to keep my body cool because if I get too hot, I will have aching pains on my foot, my arms or legs. My school is literally like a fire-breathing dragon,” she said.

    Calina’s school has been having problems with its heating and air-conditioning system, and the heat that gets trapped in the building causes her asthma to flare up and leads to pain episodes.

    Calina with her graduating mother

    Lucky for her, she has moved to a new school, thanks to her mom’s relentless advocacy. It’s something she is teaching her daughter as well.

    “We have these conversations at home, and sometimes she gets emotional,” Jones said. “I tell her, ‘I understand your frustrations, but it’s something you’re going to have to live with.’

    “The faster she gets used to acknowledging and coming to terms with it, the better it will be when she gets to adolescence because I don’t want her to feel like she’s different from other kids or maybe blame herself for her illness.”

    MAKING HERSELF HEARD

    Jones allows her daughter to hear her when she is making calls on her behalf, knowing that it’s important for her to learn to advocate for herself as she gets older.

    “I want Calina to tell doctors what’s happening and make herself heard.”

    Advocacy did not come naturally to Jones.

    “I was a teen mom, so I had to step into that adult role and figure out how to navigate the medical side of the disease,” she said. “I didn’t know anything about sickle cell. I wish more people were aware of sickle cell. You may not look sick, but you never know what people are feeling on the inside and the pain they’re dealing with.”

    When Dr. Jacob steps into the room, Calina sits up straight and talks to the physician about school, animals and her pain. The physician uses her stethoscope to listen to Calina’s lungs and heart.

    When Calina asks to reverse roles, Dr. Jacob waits while her patient holds the medical device up to her white coat.

    “Hear anything?” Dr. Jacob asks.

    “It’s a healthy heart,” Calina responds, with her trademark smile.

    Asked what she looks for during these visits, Dr. Jacob said one of the big things they pay attention to is whether there have been any hospitalizations or emergency room visits in the preceding months.

    “That tells us if there are changes in disease severity,” she said. “We keep track of how many pain episodes kids have in a year. We know that the more hospitalizations they have, the more severe the disease is. Three or more hospitalizations for pain in a year increases the chances for them to have additional complications.”

    Those complications can include anemia (requiring blood transfusions), jaundice, severe pain, stroke and organ failure. That’s why regular visits with Riley’s sickle cell team are so important, Dr. Jacob said.

    “Her mom’s dedication to getting Calina the best care possible, and advocating for her all along the way, has made all the difference in Calina’s care.”

    ACCESS TO CARE LIMITED FOR SOME

    The family’s story illustrates the disparity in access to sickle cell care, not only in Indiana, but throughout the United States, Dr. Jacob said, as compared to other rare, inherited diseases.

    She knows that traveling several hours to Indianapolis can be a hardship.

    Calina talks with Dr. Jacobs

    “Studies estimate that fewer than 70% of children with sickle cell disease receive comprehensive care, and only 20% experience effective care coordination between primary and subspecialty providers.”

    While families like Calina’s may find accessing expert, comprehensive care for sickle cell a burden, it is a tradeoff they are willing to accept.

    “They are willing to endure this just to have a team knowledgeable about the disease caring for their child,” Dr. Jacob said.

    Riley instituted telemedicine for sickle cell care even before the pandemic and has recently received funding from the National Institutes of Health to expand to other parts of the state.

    “We want our families to walk away from a visit with us feeling they have a team that cares about and supports them, while also receiving high-quality, evidence-based medical care,” Dr. Jacob said.

    September is Sickle Cell Awareness Month, and Dr. Jacob wants to use this opportunity to send a message to the community:

    “We need others to know that despite all we do at Riley, patients with sickle cell disease are a distinct population experiencing healthcare disparities and inequities in our nation,” she said.

    “We need improved awareness about the disease within our communities, as well as increased funding and support for sickle cell centers across the country. And we need Hoosiers to stand with us to advocate for a population that has been neglected for far too long.”

    Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/retired-cardiologist-dr-randall-caldwell-named-healthcare-hero Retired cardiologist Dr. Randall Caldwell named Healthcare Hero 2021-09-21T08:45:00-04:00 2022-04-08T11:47:13-04:00 By Maureen Gilmer, senior journalist, mgilmer1@iuhealth.org

    It will surprise absolutely no one who knows him to hear that Dr. Randall Caldwell doesn’t like the spotlight.

    So, receiving the Indianapolis Business Journal’s Healthcare Hero Award for top physician was not on a list of honors he sought.

    Nonetheless, the retired cardiologist who served patients and families at Riley Hospital for Children for nearly 43 years received that award last week during a breakfast to recognize those in the medical profession.

    Dr. Caldwell, who retired Jan. 1 of this year, might have thought he was finished collecting honors for his long and distinguished career. But his Riley family wanted this recognition for him.

    “Over his storied career, Dr. Caldwell served as director of the echocardiogram and pediatric heart transplant programs at Riley,” said Dr. Elaine Cox, chief medical director of Riley, in her nomination letter.

    “He helped launch the heart transplant program at Riley in 1989 and helped give new lives to more than 170 children through cardiac transplantation,” she added.

    His expertise and compassionate care were hallmarks of his career, influencing others, like former patient and current Riley pediatric cardiologist Dr. John Parent, to follow in his footsteps.

    “As my high school years progressed and I pondered what I wanted to do with my life, it became obvious I wanted to be like Dr. Caldwell,” Dr. Parent said. “I wanted people to trust me in that way, and I was inspired to work in a field I was exposed to first-hand as a child.”

    Dr. Caldwell examining a child

    Dr. Caldwell said by phone Friday that any honors he has received must be shared with the Riley team.

    “It’s very much a team effort,” he said. “The honors, while I appreciate them, are not that important to me. I’m happy to have other people at the podium.”

    That humble nature defines the beloved physician, who was just the third pediatric cardiologist in the state when he joined Riley the day after completing his fellowship. The other two – Drs. Don Girod and Roger Hurwitz – were also at Riley.

    Together, they elevated and expanded Riley’s young pediatric cardiology program into a world-class heart center, currently ranked fifth in the nation in U.S. News & World Report’s hospital rankings survey.

    “This award really is shared among all the people I’ve worked with,” Dr. Caldwell said. “If you work with good people, it makes work a pleasure.”

    Leaving Riley was not easy, but COVID-19 convinced him it was time to step away – that there was more to be done in life beyond work. But he acknowledges he has missed it.

    “Riley is like a second family, not just the people I worked with but the patients too. With COVID, we were more separated and isolated, so it was very difficult,” he said.

    “I felt like I was already withdrawing to some degree because of those restrictions, and I realized it was probably going to be easier just to walk away, then maybe come back some day and see people.”

    Since retiring nearly nine months ago, the Indianapolis native has thrown himself into volunteer work – at his church and at Hope Center Indy, a residential program for women who’ve been trafficked.

    “I’ve been doing some carpentry and painting there,” he said, “things that don’t require a medical degree.”

    “I can’t sit down and do nothing, so I transferred my energies to other things.”

    Hobbies are nice, he said, but he feels a duty to do more.

    “When we retire, we don’t retire from life. I think it’s important to continue giving back to the community and to other people,” he said. “You have to keep investing in other people. That’s what I’m doing now, and I’m enjoying that immensely.”

    Also honored during the IBJ Healthcare Heroes event:

    The Riley Nursing Professional Development team, which trained nurses for redeployment during the pandemic and established a skills training lab, allowing nurses to step into patient-care roles as COVID cases climbed and staffing was stretched thin.

    What they created became a blueprint for other hospitals throughout the state.

    “The plan would never have been successful had it not been for the hundreds of selfless nurses putting themselves out of their comfort zone to answer the call,” said Greta Price, director of clinical professional development and patient education.

    Marge Crouch, a Riley volunteer, was also recognized for her work to create the Riley Comfort Cart, “a convenience store on wheels,” providing free toiletries, snacks and other items to Riley families.

    “Marge is the wings of the program,” said Susan Schwarz, Riley’s volunteer resources coordinator.

    ]]>
    https://www.rileychildrens.org/connections/podcast-maternity-matters-what-to-keep-in-mind-when-you-bring-baby-home-from-hospital PODCAST: Maternity Matters: What to keep in mind when you bring baby home from hospital 2021-09-20T10:05:00-04:00 2021-09-20T10:10:01-04:00

    Listen to more Maternity Matters episodes.

    ]]>
    https://www.rileychildrens.org/connections/i-wish-people-could-see-what-we-see “I wish people could see what we see” 2021-09-15T16:12:00-04:00 2022-04-11T14:39:19-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Aimee Ealy has seen the fear up close.

    The fear in the eyes of young patients struggling to breathe. The fear in the eyes of parents who want desperately to see their child healed.

    Ealy is 21 years into her career in respiratory therapy, a job not many understood until a pandemic thrust that role into the public eye.

    Aimee Ealy

    She sure never expected to be working amid a global disease outbreak that has killed more than 650,000 fellow human beings in the United States alone. She never expected that two of her own children would be Riley kids either.

    But life is unpredictable. And Ealy walks by faith, choosing to accept the trials along with the triumphs and follow her calling as a healthcare professional.

    RILEY ANGELS

    Ealy is one of the many “angels on Earth” who walk the halls of Riley Hospital for Children. That’s how at least one observer described her and her colleagues.

    It wasn’t until college that she figured out what she wanted to do in life. But the career influence started much earlier.

    As an asthma patient and a Riley kid herself, she was introduced at a young age to healthcare.

    “I really liked the science of respiratory therapy,” she said. “I like working with the physicians and figuring things out. It involves a lot of critical thinking.”

    Respiratory therapists treat patients with breathing or cardiopulmonary disorders. They also provide emergency care to patients suffering from heart attacks, drowning or shock.

    Now a clinical specialist for respiratory care, Ealy does education, training and patient care, primarily on 7E, the pediatric intensive care unit.

    SCARED FOR HER KIDS

    Eighteen months ago, she and her colleagues in the PICU were racing to learn as much as they could about COVID-19 and how best to support patients. They ran through multiple simulations, worried not only about keeping patients safe but keeping themselves safe.

    “It was really scary at first because I was worried that I might bring this home to my family,” Ealy said. “I have two children who wouldn’t fare very well with it.”

    Aimee Ealy

    Ealy and her husband, Dan, have three sons, ages 19, 17 and 15. The oldest battled cancer two years ago, and the middle son has Duchenne Muscular Dystrophy, a rare genetic disease that leads to progressive muscle degeneration.

    Those early days of the virus were pretty scary. But things didn’t get really hairy in terms of patient load at Riley until this summer, she said.

    “Between COVID and RSV, we’ve been hit really hard. It’s horrible. When I go in, I know that I’m probably not going to get a lunch break and never leave the unit. It’s just so busy. It’s 12 hours of not sitting down, just being slammed.”

    RESILIENCE AND HEART

    Beth Summitt, director of respiratory care at Riley, has known Ealy for her entire career. The two were in school together, though Summitt was a couple years ahead of Ealy. They worked side by side for years until Summitt took a leadership role 2½ years ago.

    “Aimee is one of the most respected people in our department. She is clinically amazing, and she has a heart of gold,” Summitt said. “She’s one of the most resilient people I know.”

    But even Ealy is anxious about the rising patient load at Riley. And when it comes to COVID, she wishes she could show people how bad it is.

    “I’ve been doing this for 20 years, and I wish people could see what we see. I think they would take it more seriously,” she said. “You don’t understand what this does. People will say, well, they didn’t die, so it’s OK. It’s not just death. It’s seeing what these families go through. These kids come in, they’re scared, they can’t breathe, they see all this stuff on the news.

    “To see these kids go through that, and when they look at you and say, ‘I can’t breathe,’ it’s hard. Say your child does get it and they survive,” she continued. “If they’ve been in intensive care, it’s months of rehab, it can affect the heart.”

    In the most serious cases, which is what she sees in intensive care, it’s Ealy’s job to intubate patients by putting a breathing tube down their throat. She tries to reassure the child and parent that she is going to help them breathe, “but I also don’t want to say everything’s going to be OK.”

    Because she doesn’t know that.

    “They are just so sick.”

    VACCINATIONS ARE KEY

    At first, she was frustrated when she would hear people say that the virus only affected older people and those with co-morbidities, such as diabetes, heart conditions, asthma, etc.

    “Those people are not disposable. My sons are not disposable. My parents are not disposable.”

    With the introduction of vaccines in December 2020, her anxiety leveled off, especially this year when she was able to get all of her teenage sons vaccinated.

    But now, the virus is coming for kids, a large swath of whom are unable to be vaccinated yet.

    The American Academy of Pediatrics warned this week that the number of COVID cases in children has risen “exponentially,” accounting for nearly 30% of new cases last week.

    “My house is vaccinated, so that was a relief,” Ealy said, though she worries about breakthrough infections, which are rare, according to the CDC, and typically don’t result in serious illness.

    Overall, more than 9 in 10 COVID hospitalizations and deaths now occur in people who are unvaccinated, studies have shown.

    Ealy has seen death in the PICU. She wouldn’t be human if it didn’t shake her.

    The past year and a half have been traumatic for everyone, she said. From sickness and death to mental illness and isolation, it all takes a toll.

    “There is so much misinformation out there,” Ealy said. “What frustrates me is people will trust us when their child is sick, but they won’t trust the medical community when it comes to vaccines.”

    CALMING FEARS

    Summitt has watched Ealy and the other 140 members of the RT department rise to meet the COVID challenge at Riley Downtown, IU Health North, Riley at IU Health Methodist Hospital and Methodist labor and delivery, soon to be moving to Riley’s new maternity tower.

    Beth Summitt

    “In the height of COVID the first time (2020), I could tell that my team was going to battle significant fear, because this wasn’t just something we were going to face at work. We’re all facing this in our personal lives as well,” Summitt said.

    “We started seeing the numbers spike and I was having more and more team members out with COVID, and we had to figure out how to handle that with privacy concerns,” she said. “There was just this extreme panic and fear.”

    She calmed those fears with the best thing she could offer – information and communication. She began doing twice-daily group calls with her team, updating them on rapidly changing procedures, sharing as much information as she could about protective equipment, the number of ICU beds that IU Health had available and the number of ventilators in use.

    “I had to be the voice of calm for my team and tell them we’re going to get through this,” she said. “This is why you came into healthcare. We are the emergency people. Respiratory therapy is who they call when it is literally hitting the fan. We’re the airway people. This is your day.”

    It was a rallying cry.

    HEROES AT THE BEDSIDE

    Never before had she seen respiratory therapy highlighted on the news like it has been during COVID. She used it to motivate her team in those early months, then she gave them the facts.

    “This is what I know today; it’s going to change tomorrow,” she would tell them, because guidelines and procedures were constantly changing to meet the evolving threat.

    Ealy found those calls extremely helpful.

    “As we learned more, we changed not only how we cared for our patients, but how we protected ourselves,” she said. “It also put to rest any rumors that may have started.”

    Today, even though cases have risen, the team feels better prepared to handle the crisis because they have learned so much over the past 18 months. That experience and her sons’ illnesses have made Ealy a better clinician, said Summitt, who also has a child who is a Riley patient.

    Aimee Ealy

    “You think you’re a compassionate person, but when you’re really on the other side of the bed and it’s your child that people are taking care of, it’s just amazing how you look at that situation differently,” Summitt said.

    “Now, giving the best care designed for you is not just a slogan. We know what that looks like. We know when it’s done well and when it’s not. It has changed both of us.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/from-pint-sized-preemie-to-active-toddler From pint-sized preemie to active toddler 2021-09-14T15:47:00-04:00 2022-04-11T14:40:13-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    When Deanna Adams looks at her active, joyful little girl, Kailey, she knows she is blessed. Yet she can’t help but see who is not there, Kailey’s twin, Leigha.

    The girls were born nearly three months’ prematurely in October 2018 at an Indianapolis hospital. Kailey weighed 1 pound, 14 ounces. Her sister weighed 2 pounds but lived just six hours. Within two weeks, Kailey was transferred to Riley Hospital for Children, where she would stay for three months.

    Kailey

    “I think about those days all the time,” said Adams, who now lives in Lafayette with Kailey, who turns 3 next month, and her two older sisters. “I think about how far she’s come and how worried I was. If I could go back and tell myself then what I know now, maybe I wouldn’t have worried so much.”

    There was not a lot of sleep in those days, Adams said, but it helped to bond with other moms and dads who were going through the same experience. Sadly, some of those children didn’t survive, and Adams grieved with their parents, just as she did over the loss of Kailey’s twin sister.

    “I feel it. I share that pain,” she said.

    She was in awe of the Riley nurses who helped teach her how to care for her fragile baby.

    “There were a couple instances where she completely stopped breathing,” Adams recalled. “Once, she turned purple and I was just freaking out, and all of the nurses were so calm and got her breathing again. I was like, I can’t do this.”

    But she could. And she did.

    Kailey

    “The nurses were so supportive. They talked me through everything, they showed me things multiple times.”

    Adams rarely left Riley, so she learned early on how to participate in her daughter’s care, gaining confidence along the way.

    “I was taking it all in, and they were really encouraging, telling me, ‘You’ve got this.’ ”

    When Kailey was discharged, she went home on oxygen support and a feeding tube, but today the 22-pound toddler is free from that supportive equipment. She has been participating in First Steps to get her caught up developmentally and is excited about starting preschool soon, her mom said.

    She not only walks as well as any 3-year-old, she runs – fast.

    “She loves to run around and get into trouble,” Adams laughed. “She’s fast, and she’ll tell you she’s fast.”

    Kailey’s fine motor skills are improving too, though she still prefers to eat everything with her fingers, Adams said. She has a lot to say and has a decent vocabulary, but she is still learning how to string words together into sentences.

    Kailey

    What she loves most of all is playing with her older sisters, doing her best to be like them, especially when that means playing games on her tablet and wearing her little headphones.

    That’s why she’s so excited to go to preschool. She has her backpack ready and wants to follow in their footsteps.

    COVID-19 has been a dark cloud over the family these past 18 months, Adams acknowledged, leaving her feeling anxious and super-protective.

    “COVID scares the crap out of me,” she said with brutal frankness. “I try not to go anywhere with her if I don’t have to.”

    Kailey

    Kailey still follows up with the pulmonary team at Riley due to respiratory issues at birth, so her mom is vigilant about keeping her and her sisters safe.

    “Even though I’m vaccinated and my oldest daughter is vaccinated, we always wear masks wherever we go. We’re constantly sanitizing. If I have to take Kailey out, she has her mask. I give her a pacifier and put a mask on over it and she keeps the mask on.”

    The Delta variant of COVID-19 is highly transmissible and is striking more and more children. In fact, Riley Hospital currently has more than double the number of pediatric patients hospitalized with the virus than at the pandemic’s height last year.

    There is not yet a vaccine available for kids ages 0 to 11, but those 12 and older are eligible to receive the Pfizer vaccine.

    “It’s extremely scary right now,” Adams said.

    Lucky for her, Kailey is too busy living life to notice.

    September is Neonatal Intensive Care Awareness Month, designed to honor NICU patients, families and health professionals.

    Photos submitted. 2018 file photo by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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    https://www.rileychildrens.org/connections/podcast-maternity-matters-milk-lab-at-riley-hospital-for-children PODCAST: Maternity Matters - Milk Lab at Riley Hospital for Children 2021-09-13T08:06:00-04:00 2021-10-20T16:36:53-04:00

    Listen to more Maternity Matters episodes.

    ]]>
    https://www.rileychildrens.org/connections/how-to-manage-kids-screen-time How to manage kids' screen time 2021-09-10T15:27:00-04:00 2021-09-10T15:35:30-04:00 While screen-based technology has helped people continue work and school during the pandemic, remote learning and working from home have made it difficult for many children and adults to limit daily screen use.

    Excessive use of computers, tablets, TVs and smartphones can cause a variety of health issues, including difficulty sleeping, weight gain, vision and attention problems, mood disorders, and more.

    The American Academy of Pediatrics recommends the following screen time guidelines for children:

    • 0 to 24 months – No screen time other than video calls or chats with relatives or close friends
    • 2 years to 5 years – Limit screen use to one hour per day of high-quality programming
    • 5 years and older – Two hours of screen time per day

    “With children learning remotely and parents working from home, it’s understandable that many parents—and even adults, for that matter—are finding it difficult to limit screen time,” says Emma Hollingsworth, MD, a family medicine physician with IU Health Physicians Family Medicine in Indianapolis. “While we need to give ourselves some grace in this unusual time, it’s important to keep screen time limits top of mind and look for alternative ways to spend time when screens are being used just for recreation or to pass the time.”

    Tips for limiting screen time

    Setting limits for screen time is often easier, Hollingsworth says, when both adults and children in the family follow the same rules. Some suggestions include:

    • Establishing a cut-off time at night for screen use. Designate a place for all phones, tablets and laptops to be stored at the end of the day.
    • Keeping smartphones and other mobile devices out of bedrooms overnight. Charge devices in a central location downstairs; use a traditional alarm clock for waking in the morning.
    • Making mealtime screen free. This helps encourage family connection. It also prevents mindless eating and enables both children and adults to notice when they are full.

    Managing screen time for different ages – younger kids, teens and adults, too

    “For younger children, we recommend that whenever possible, parents watch programming with their child and use it as something to talk about together—instead of just something the kids do on their own,” Hollingsworth says.

    Staying on social media and using mobile devices late at night are areas where older children and teenagers often struggle.

    “Social media and screens are addictive,” Hollingsworth says. “If it’s difficult for an adult to put down their phone and not check Instagram several times a day, then think how hard it is for a teenager who doesn’t have as much life experience with setting limits.”

    Encouraging children and teens to take part in other activities, such as sports, a hobby, or something that doesn’t rely on a screen, is one of the most important things parents can do to help set healthy boundaries for screen time.

    “I always tell parents to work toward getting their child to do at least one physical thing a day that gets them up and moving and one creative activity a day,” she says. “Using screens just to pass time is less likely when kids are busy with other healthy activities in their life.”

    While the focus tends to be on setting screen time limits for children, adults also should be mindful of screen time habits. Because adults can experience similar health effects from excessive screen use, Hollingsworth recommends limiting screen time to essential tasks and taking breaks from screens when they are necessary for work or school.

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    https://www.rileychildrens.org/connections/for-me-this-was-the-best-way-to-protect-my-baby “For me, this was the best way to protect my baby” 2021-09-09T14:31:00-04:00 2022-04-04T10:11:11-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Three women. Each one pregnant, each one a healthcare worker during an uncontrolled pandemic.

    After learning as much as they could and talking to their doctors, each one decided to get the COVID-19 vaccine earlier this year. Now, they are practically begging other pregnant women to do the same, understanding that some are still fearful.

    Nationwide, just 23% of pregnant women are vaccinated against COVID-19, according to data released by the Centers for Disease Control last month. Less than one in four.

    That is despite growing evidence that moms-to-be are at higher risk for serious disease should they contract the virus and studies that show the vaccine is safe for pregnant women and their unborn babies.

    “I WAS CAUTIOUS”

    Armisha Desai is a pharmacist at IU Health Methodist Hospital and a new mom. Her son, Ayur, is 8 weeks old. She could have been vaccinated in late December 2020 when the Pfizer vaccine rolled out to healthcare workers, but she elected to wait a couple of weeks until January.

    Armisha with her son Ayur and dog

    “I was vaccinated at the start of my second trimester,” she said. “I was cautious, I talked to my OB provider. With the side effects of fever and fatigue that you can get with the vaccine, we decided to wait just a little longer. But as soon as I reached 12 weeks, I scheduled my appointment.”

    She had no side effects from either dose and carried her son to term. Ayur is getting breast milk from his mom, which she believes is increasing his immunity to the virus. When it’s time for her third shot this fall, she will be ready.

    “I want to get my third shot to increase my antibodies in my breast milk and pass those antibodies on to him,” she said. “Any potential benefit out there I want to take.”

    Desai, who is on maternity leave until next month, specializes in infectious disease pharmacy, so she has worked (indirectly) with many COVID patients admitted to the hospital in the past year.

    “I know firsthand that pregnant patients have more severe complications with COVID than other young people. It’s much safer to get the vaccine than to be pregnant and get COVID.”

    She helped IU Health develop treatment algorithms for COVID and discussed with providers which patients met which qualifications for therapies.

    “The data show that the vaccine is safe for pregnant women,” Desai said.

    Those who get the vaccine are not only protecting themselves, they are protecting their babies, experts say.

    “That’s what mothers want – to protect their babies,” she said. “For me, this was the best way to protect my baby. I’m passionate about this as a new mom.”

    SEVERE OUTCOMES CAN BE PREVENTED

    Dr. Lana Dbeibo, medical director for infection prevention at Methodist Hospital, said her heart breaks for pregnant women who are unvaccinated and struggling in the ICU because of COVID.

    mother and child

    “We are seeing pregnant women who are unvaccinated who have concerns over the vaccine causing problems for them or their babies, and they are coming into the hospital sick, especially considering their age,” she said. “They are really getting sick, requiring oxygen and intensive care support at times, and I really feel like this is all preventable.”

    The CDC encourages all pregnant women and those who are thinking about becoming pregnant, as well as those who are breastfeeding, to get vaccinated, said CDC Director Dr. Rochelle Walensky in a statement released last month.

    “The vaccines are safe and effective, and it has never been more urgent to increase vaccinations as we face the highly transmissible Delta variant and see severe outcomes from COVID-19 among unvaccinated pregnant people.”

    Those outcomes can include oxygen support, being put on a ventilator, pre-term birth, even death.

    Dr. Christina Scifres, division director for Maternal Fetal Medicine at Riley Hospital for Children at IU Health and associate professor of obstetrics and gynecology, said she and her team have been concerned about COVID in pregnancy since the pandemic began last year, but the Delta variant appears to be making more pregnant women very sick.

    Why that’s happening is unclear, but Dr. Scifres said it could be due to changes in the immune system or pulmonary system related to pregnancy.

    “We’ve had women admitted to the ICU and needing to be on a ventilator and even needing to be on an ECMO machine (heart-lung bypass),” she said. “There have been some maternal deaths in Indiana and around the country.”

    READY FOR HER THIRD SHOT

    Dr. Dbeibo, who was breastfeeding her first child when she got the vaccine and is now pregnant with her second child, said she would absolutely get a third shot while pregnant if that is recommended this fall.

    “I can’t imagine advising women to do something that I wouldn’t do myself,” she said. “If I didn’t believe in it, I wouldn’t be giving that advice. We know the vaccines work for everyone, including pregnant individuals. We know with more and more data that it’s not going to cause harm to them or their unborn child. It prevents hospitalization, bad outcomes and death.”

    The sooner a woman gets the vaccine, the sooner she and her child are protected, the infectious disease specialist said.

    “Mom is the closest person to the child, so if she gets infected, the risk of transmission to the child is high. The rates we’re seeing right now with this variant are sky-high.”

    While no one should consider themselves at low risk for getting exposed, no matter how careful they are, the vaccine prevents more serious illness, Dr. Dbeibo said.

    “Even though these women are younger, we are seeing younger people in the hospital, and the fact that they are pregnant actually does put them at risk for having bad forms of COVID,” she said. “Pregnant women have a higher chance of admission to the ICU compared to others, and they are at higher risk of adverse pregnancy outcomes.”

    AN URGENT PLEA

    Each of the women interviewed for this story is desperate to communicate the urgency of pregnant women getting vaccinated against the deadly virus. Conflicting messaging over the past 18 months has left some skeptical of the seriousness of the disease, despite a death toll now of more than 650,000 in the U.S. alone.

    The vaccine rollout was supposed to put COVID-19 in the rearview mirror, but nearly half of the U.S. population is yet to be vaccinated, including children (for which there is no approved vaccine yet for ages 0-11).

    “We’re talking about getting protected at a time when the pandemic is at its worst,” Dr. Dbeibo said. “Not only are infection rates high, but hospitals are almost full. We have something that is lifesaving for us and we have a pandemic that is raging, completely uncontrolled, and we’re still in the summer,” she said.

    “We haven’t seen the worst of it yet and we’re already at capacity. The health system is overburdened. I worry about pregnant women having access to good care because hospitals are full, and they could have averted that outcome by just getting a shot.”

    Now six months pregnant, Dr. Dbeibo understands the hesitancy some women feel about the vaccine, but she urges them to consider the consequences of doing nothing.

    “I totally understand that they don’t want to do something excessive that might have a risk. But I would emphasize that COVID will hurt their baby much, much more. I can’t imagine a mom who is delivering her baby while she’s intubated and can’t have those first moments with her baby. Or the baby getting an infection from the mom while their immune system is basically nonexistent when they are born. That will hurt the baby. Losing their mom will hurt the baby,” she said.

    “So, no, you won’t be hurting your baby with the vaccine. COVID will hurt your baby. I think the fear is misdirected – it should be fear of the virus, not the vaccine. We don’t know what the virus is going to do to us. It’s not a benign thing. We can’t say we’ll get it and get over it. There is a significant risk, and it is certainly higher than the vaccine.”

    CONVINCED BY THE DATA

    Dr. Geeta Karnik Mantravadi, medical director of IU Health LifeCare and an infectious disease specialist at Methodist, delivered her baby boy in May. He is her first child, the result of many years of trying to conceive and carry a child to term.

    “It took us a while to get him,” she said, “and you always worry. He was my precious baby and this (the vaccine) was new. So I definitely understood other women’s concerns, and I did want to wait a bit to have more data come out.”

    But she also understood the risks better than most. She worked on COVID units at Methodist in 2020 and had seen firsthand as an infectious disease specialist how pregnant women were coming in with more serious forms of the virus.

    She was fortunate that when she became pregnant she was able to step away from her work in the units, which gave her a little time to think and not risk exposing herself before she was vaccinated.

    “It was always a matter of weighing risks and benefits, and ultimately the data has shown that the vaccines are safe and effective,” she said. “When I made my decision to get it, I felt really confident because there had been such good CDC analysis and other data demonstrating that there were really no safety concerns.”

    Dr. Mantravadi said anytime she felt herself hesitating about getting vaccinated, she had flashes of real-life unvaccinated patients who suffered severe illness, pre-term labor, miscarriage.

    “Those images and stories flashed in my mind, and I realized it’s way better to get the vaccine. And now women have the benefit of nine months of data. It’s a no-brainer.”

    She received the vaccine during her second trimester, and although her son was born six weeks early after she developed pre-eclampsia, he was perfectly healthy, she said.

    She has done her best to correct misconceptions about COVID and the vaccine with patients, friends and acquaintances, but she worries about the higher transmission rates of the Delta variant and what it could mean down the road.

    The vaccine isn’t bullet-proof, she said, but not getting it carries a much greater risk.

    “The vast majority of people being admitted to the hospital are unvaccinated individuals,” she said. “It’s just so clear how risky it is at this point. For me, it was a personal decision, but everyone wants to be a good mom and that means making hard decisions. The first step these days is getting the vaccine.”

    A GLIMMER OF HOPE

    As the healthcare system around the country continues to be upended by the virus, Dr. Scifres and her Maternal Fetal Medicine team continue to stress the safety of the vaccine during pregnancy with their patients.

    “We’ve certainly never seen anyone hospitalized from taking the vaccine, but we’ve seen plenty of women hospitalized from COVID,” she said. “And the patients we’re seeing who are getting very sick have not been vaccinated.”

    In talking with patients, she knows that some women are concerned because of something they might have seen on social media or heard from a friend, so she does her best to reassure them.

    Maybe the message is getting through.

    “I do feel like we’re seeing more pregnant women get vaccinated, and I think that brings us all hope,” said Dr. Scifres, a mother of two. Her older child is vaccinated, and she is holding her breath until the younger one can be, she said.

    “I want to let patients know that we make this recommendation out of an abundance of care for them and their babies. We want to do everything we can to protect them.”

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    https://www.rileychildrens.org/connections/a-hero-in-scrubs-picu-nurse-leaves-a-legacy-of-love A hero in scrubs, PICU nurse leaves a legacy of love 2021-09-09T08:07:00-04:00 2022-03-23T10:31:20-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    They came in their beachy attire, their Hawaiian shirts and grass skirts, with smiles on their faces masking tears in their eyes.

    They came to say goodbye, I love you, thank you.

    Lisa Fouse Roberts being celebrated by friends and family

    They came to lift up Lisa Fouse Roberts, beloved friend and co-worker, as she eased her way out of this world on hospice after a five-year battle with incurable, metastatic breast cancer.

    About two dozen people, most representing the pediatric intensive care unit at Riley Hospital for Children, surprised Lisa at her home on the last Sunday in August. The PICU squad brought signs, balloons and memories to share.

    If you stretched the sign boards out, they spelled “Lisa we love you to the beach and back.” The beach theme was a tribute to Lisa’s favorite place in the world. The only thing that might have made it better would have been margaritas for all. (Adults, that is.)

    They took turns sharing memories, funny stories and lessons they learned from their friend, colleague, mentor and role model. All of it captured on a recording to be savored by Lisa’s family in the days to come.

    Jane Watson singing karaoke

    Charge nurse Jane Watson even did a little singing, karaoke-style, to the tune of “American Pie,” taking some creative licensing with the lyrics.

    “I can’t carry a tune, and to do this in front of all these people, well I wouldn’t do it for anyone else,” Watson said.

    That’s how much Lisa was loved.

    “I’M SO GRATEFUL OUR LIVES CROSSED PATHS”

    Lisa Roberts worked in Riley’s PICU for nearly 20 years. She was the nurse every young nurse wanted to be, the nurse every parent wanted for their child.

    She was the total package. Wise, experienced, calm, compassionate. She often knew what a patient or parent needed before they knew it themselves.

    Tiffany Johnson was one of those parents. Her daughter, Ayana, was one of Lisa’s patients 18 years ago. Ayana was hospitalized at Riley for nearly a year after her birth.

    “As long as Lisa was there, I didn’t have anything to worry about,” Johnson said. “She was everything to my daughter. When I was not there, she was the mommy. She kept me sane during that very tumultuous time.”

    Lisa always had an encouraging word and made sure Johnson understood everything the doctors said about her little girl, who just celebrated her 19th birthday.

    “I’m so grateful our lives crossed paths.”

    DIGNITY AND GRACE

    Dr. Veda Ackerman, who retired from Riley a year ago, worked with Lisa for more years than she can remember. But she’ll never forget the impact she had.

    “Lisa has always been an outstanding nurse and an outstanding mentor to young nurses, but when she was diagnosed several years ago, she just never let it stop her. She came to work and did an amazing job with the patients, and I think she demonstrated so well to a younger generation the whole process of commitment and doing what’s right for yourself.”

    By that, Dr. Ackerman means Lisa chose her own path in her five-year journey with cancer. Told she could live anywhere from three months to 10 years, she chose not to have some of the more aggressive treatment that would have left her unable to work, unable to care for her two kids.

    “I think her legacy will be showing this younger generation that it is appropriate and good to plan your own destiny,” Dr. Ackerman said. “She is demonstrating that you can have death with dignity and grace, and I think she practiced that with our patients who couldn’t survive.”

    “SO MANY LAYERS TO LISA”

    Her cancer journey has been marked by courage, according to Watson and other nursing colleagues.

    “There are so many layers to Lisa,” said Watson, describing her friend as “a quiet, private, humble person who just does her job.”

    “When she got diagnosed and they gave her three months to 10 years, I don’t know what you do with that. But she just showed up and lived her life.”

    In fact, many of the younger nurses she worked with didn’t even know she was sick. Up until July, she was still working full time, giving her all to patients and families as if everything was normal in her own life.

    “Her courage has been a testament to so many people,” Watson said. “Here she was giving excellent, compassionate, bedside care and her own life was falling apart. She didn’t know how long she was going to live, but she still showed up. She was never the victim.”

    Working in the PICU is not for the faint of heart. Patients are critically ill or injured, and they often can’t speak for themselves. And while the meds and the machines are crucial, so too are the little things that Lisa practiced. Whether that was flossing a child’s teeth, brushing their hair or bringing them an extra blanket, it was all part of the care she provided.

    “From a charge nurse perspective, I just loved it when I saw her name on the roster because I knew she had things under control,” Watson said. “The longer I do this, the harder it weighs on my heart what these parents have to go through and what these kids have to go through, but it always brought me comfort on those days when our gift to them in all the darkness and all the stress was Lisa.”

    Not only a gift to her patients, Lisa was a mentor and a friend and a shining example of how to be a good nurse and a good human.

    She and her former husband, Jack, were foster parents for years and adopted two of those foster children several years ago.

    “It takes a lot to open your heart to work in the PICU,” Watson said, “but to open it up beyond that to bring these kids into your home and you have no idea what you’re signing up for … I feel like I have a big heart, but it’s not that big.”

    FINDING HER PURPOSE

    Lisa was a constant source of encouragement for her nursing colleagues, especially when they have doubted themselves.

    Kelsi Lawless remembers a day a few years ago when she struggled to come up with the right words to tell a dying teenage cancer patient what the road ahead might look like. Lisa was outside the door and heard what she said.

    That evening, when Lawless began to question privately whether she had what it took to be a PICU nurse, Lisa posted a comment on the unit’s private Facebook page, saying how impressed she was with the grace the team showed that day and how she hoped it would be the same for her when her time came.

    It was just what Lawless needed to hear in that moment.

    Friends, colleagues, and family celebrate Lisa

    “In the PICU, we struggle with anxiety, depression and PTSD from what we see, but the biggest thing she taught me is how you can take your own experience and set it aside and continue to make an impact on the world despite the heaviness of your own journey,” Lawless said.

    Lisa was also a straight shooter, something the PICU team appreciates. Sugarcoating situations can leave everyone blindsided when the worst happens, Lawless said.

    “She has been so important to younger nurses, showing us how to give patients respect, dignity and a voice in their care, depending on their age. She made me feel that my purpose in life is to be here, and I want her to know that. It’s huge to help somebody figure out their purpose.”

    That’s why she wanted to be sure Lisa knew how much she has meant to so many.

    “We live day to day, and we don’t tell people how much they impact us. I’m glad we were able to do that for her.”

    “AN AMAZING LEGACY”

    The nurses mentored by Lisa are fortunate, Dr. Ackerman agreed. They are strong because she taught them how to be strong.

    “She’s been so influential in so many young lives,” the retired critical care physician said. “She leaves an amazing legacy of outstanding peds ICU nursing.”

    And death is part of the PICU.

    “We have a lot of people who can’t talk about it easily and certainly would have a hard time talking about their own death,” Dr. Ackerman said. “That shows you what kind of nurse she was. She could talk about anything and help families on that journey. It’s pretty amazing the example she set for those families who never knew what she was dealing with personally.”

    When it came time to surrender to the illness that robbed her of her ability to work after living with her diagnosis for five years, Lisa decided home was where she wanted to be.

    That decision alone took a wealth of courage, Watson said.

    To honor that courage, that resolve and that commitment to live her best life to the end, her PICU family gathered around her on Aug. 29 to hold her in the warmth of their love.

    They sang and danced. They laughed and cried. They prayed for their friend, who greeted their smiles and tears with her own.

    Celebration of Lisa with a sign that reads, "Lisa we heart you to the beach and back"

    If they could have gotten her to a beach with a margarita in hand, that’s what they would have done. But feeling the love on that day surely reminded Lisa of the sun on her face and an ocean breeze at her back.

    “Your legacy will remain in the halls of the Riley PICU,” Watson told her friend. “You have made us all better people.”

    Lisa passed away at home Tuesday night with her family by her side. She died as she lived, with grace and dignity, with love in her heart.

    Photos by A.R. Davis Photography

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    https://www.rileychildrens.org/connections/riley-earns-top-marks-from-american-college-of-surgeons Riley earns top marks from American College of Surgeons 2021-09-07T12:05:00-04:00 2022-04-11T10:24:11-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Riley Hospital for Children received news last week of yet another honor that demonstrates its leadership in pediatric healthcare.

    Riley at IU Health was awarded Level 1 verification from the American College of Surgeons, one of fewer than three dozen children’s hospitals in the country to achieve the designation and the only one in the state, according to Dr. R. Cartland Burns, medical director of children’s surgery.

    “It’s a big deal. It shows our commitment to continuous improvement and to quality outcomes,” Dr. Burns said. “Really it’s a demonstration of the degree of commitment and effort that the hospital puts into making sure that we are providing the best possible care.”

    The distinction is analogous to the Level 1 trauma designation Riley holds in terms of prestige, except it’s for the entire hospital, he said.

    As such, it requires “tremendous support” from everyone in the hospital, Dr. Burns said, adding the infrastructure has to be in place to demonstrate the hospital’s commitment to the program.

    Dr. Douglas Barnhart working in surgery

    In announcing the top-tier verification achievement, Dr. Douglas C. Barnhart, chairman of the ACS Verification Committee, said this:

    “Children’s surgery verification formally acknowledges your commitment to providing and supporting quality improvement and patient safety efforts for children who require surgical services. As a verified program, you have demonstrated that your center meets the needs of your patients by providing multidisciplinary, high-quality, patient-centered care.”

    The verification program is fairly new, born out of a recognition that many children were being cared for in hospitals that did not have all of the resources necessary to care for the sickest and most complex patients.

    ACS sought to perform a review of hospitals, focusing on the optimum resources for a child being treated in the surgical setting.

    “It looks at all aspects of hospital services – transport, outreach, education, ability to manage emergency surgical patients, our relationship with the Emergency Department, the PICU and NICU and how the surgical services work together in the whole hospital environment to support the most comprehensive children’s surgical care,” Dr. Burns explained.

    In its verification report, the ACS said Riley has a strong presence in the state and region with multiple outreach clinics that improve access to Riley’s specialty services.

    “Riley Hospital for Children is a premier pediatric hospital providing a full range of pediatric medical and surgical care,” the report said. “The faculty are collaborative and collegial and committed to providing high-quality care. The hospital has a strong commitment to nursing education and role development. There is a robust surgical research program and funding, (and) the children’s surgery team is experienced and deeply committed to surgical quality.”

    Riley also provides leadership in various arenas, including multiple appointments to the Indiana State Trauma Care Committee, educational offerings, involvement in the Midwest Pediatric Surgery Research Consortium, multiple pre-hospital protocols (including for traumatic brain injury) and several satellite locations to provide care, the report said.

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    https://www.rileychildrens.org/connections/newly-approved-drug-gives-hope-to-neuroblastoma-patients Newly approved drug gives hope to neuroblastoma patients 2021-09-01T07:39:00-04:00 2022-04-11T14:35:14-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Since just before his fifth birthday, Aidan Brown has been battling a monster.

    The monster’s name is cancer, and it has been a formidable foe.

    Now 16, Aidan can barely remember a time without the disease, which has come back again and again.

    “I don’t really remember much from before cancer,” the high school sophomore said. “Unfortunately, it’s a big part of my life and not in a good way.”

    All that said, Aidan is living life as best he can. He likes to be active – rock climbing, tubing, playing tennis and basketball – and he likes his video games. But he also loves watching sports, basketball mostly, and dreaming about the day he can join the NBA. Not as a player, but as a general manager.

    Aidan Brown

    “Aidan loves everything NBA, anything to do with basketball,” said his mom, Michele Brown. “He’s a savant of statistics.”

    She acknowledges having mixed feelings about his passion for video games but appreciates the connection they offered her son to his friends during much of his treatment amid COVID.

    DEVASTATING DIAGNOSIS

    The Brown family, which also includes dad Christopher and Aidan’s older brother, Alex, moved to Indianapolis from Washington, D.C., when Aidan was a toddler.

    In 2010, just before he turned 5, they received the shattering diagnosis of Stage 4 neuroblastoma, an aggressive, life-threatening cancer that most commonly attacks the early nerve cells in children. Symptoms include a lump in the neck, chest or abdomen, bulging eye, darks circles around the eyes and bone pain.

    Neuroblastoma represents about 7% of all pediatric cancers, mostly in kids younger than 5.

    Aidan underwent a tumor resection, then received chemotherapy and radiation treatment at Riley Hospital for Children.

    In 2014, he relapsed, then again in 2020.

    “We are eleven years into this,” Michele Brown said. “It’s hard to believe. We’ve had years of thinking we made it out of the fire and we were good, and then we weren’t.”

    During that time, Aidan received some of his treatment at Memorial Sloan Kettering in New York, which had access to an immunotherapy drug approved for emergency use for high-risk neuroblastoma patients.

    That drug, then referred to as 3F8 and now marketed as Danyelza, is available at Riley, one of a handful of pediatric hospitals that offer the treatment. It has made the past few months a little easier for the Brown family.

    “I THINK I CAN HELP YOU COME HOME’

    “We’ve had this mixed world between two hospitals, and the partnership has become easier to navigate over the years now that the treatment is available at Riley,” Michele said.

    She heaps praise on Dr. Jamie Renbarger, division chief for pediatric hematology/oncology at Riley, who helped ensure that Aidan could come back to Riley to finish his treatment with the drug earlier this year after he had to spend several months in New York, away from friends and his home.

    “She reached out to us in New York and said, ‘I think I can help you come home.’ When I had really big questions, she was always there,” Brown recalled.

    3F8, or Danyelza, is an antibody that attaches to neuroblastoma cells and helps focus a patient’s own immune system — especially white blood cells — to attack neuroblastoma cells.

    Aidan’s oncologist, Dr. Melissa Bear, explains that Danyelza is for a select group of patients who have relapsed after receiving standard forms of therapy.

    “These are going to be kids who’ve already had standard chemo, surgery, high-dose chemo, stem cell therapy and radiation,” she said. “And the cancer is either still there, or it went away and came back.”

    In other words, this is reserved for the sickest patients, those for whom other treatments have not been successful at keeping the cancer at bay.

    Riley was one of the sites that was involved with the clinical trial, which ended last year. When Aidan relapsed last year, Riley was able to get access to the drug that the teen had gone to New York to get.

    “Aidan really wanted to come home, and we worked with the group at Sloan to get it here,” Dr. Bear said.

    The teen completed three rounds of treatment in New York City before returning to Indianapolis in February of this year to complete another four rounds at Riley.

    “We were able to come home, which was amazing,” Michele said.

    Aidan Brown

    This hasn’t been easy for anyone in the family, least of all Aidan, but he takes his cues from those around him.

    “I wasn’t expecting to relapse twice, but every time I did there was always a bunch of people there helping out and making things easier on my parents,” the teen said. “I don’t know if I really had a positive attitude when it came to whether I’d be OK, but I knew the doctors were doing the best they could and giving me the best treatment they could and I had a bunch of good people around me.”

    A MEASURE OF HOPE

    Now FDA-approved, future patients in Central Indiana can receive the outpatient infusions at Riley, a blessing to families in the Midwest, who won’t have to travel far for treatment.

    It’s too soon to call the drug a game changer, Dr. Bear said. The data are still being compiled, but it offers a measure of hope.

    Aidan Brown

    Meanwhile, the Brebeuf Jesuit Preparatory School student returned to New York for several days in August to participate in another clinical trial, this time for a vaccine study aimed at triggering the immune system to recognize any neuroblastoma cells that pop up so the body attacks them.

    Not necessarily a treatment, it’s for patients who have completed their therapy and are trying to prevent the cancer from returning.

    Today, Aidan is trying to get back into the swing of in-person school, while his parents continue to fight for every available treatment for their boy.

    “If you looked at him, you would not know that he is a three-time warrior with cancer,” Michele said. “He is an amazing human being, thanks to a whole lot of people who have helped him survive over the years.”

    Aidan Brown

    The Riley team ranks high on that list. She describes Dr. Terry Vik, Aidan’s first oncologist, as “an amazing, incredible man who shepherded us through some of the darkest days of our lives.”

    “And now with Dr. Bear I feel the same way. She’s open and honest and communicative and encouraging. I just love the doctor team there and the nurses and their commitment to Aidan, even though Aidan wasn’t always in their line of sight,” she added.

    “We are battle-weary right now. When you’re reeling as a parent and every situation and decision feels like life and death, to have that caliber of a team and their willingness to do their job technically but also be there for you emotionally is just something that is … you don’t always get that.”

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    https://www.rileychildrens.org/connections/podcast-maternity-matters-whats-it-like-in-the-nicu-for-families PODCAST: Maternity Matters -What's it like in the NICU for families? 2021-08-30T08:44:00-04:00 2021-08-30T08:49:46-04:00

    Listen to more Maternity Matters episodes.

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    https://www.rileychildrens.org/connections/riley-named-hospital-of-the-year-by-mended-little-hearts Riley named Hospital of the Year by Mended Little Hearts 2021-08-26T09:23:00-04:00 2022-03-25T13:40:58-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Hospital of the Year. It has a nice ring to it, right?

    Riley Hospital for Children at IU Health has been recognized as the Central Region Hospital of the Year by the Mended Little Hearts organization.

    The award is presented to a hospital in recognition of its “outstanding service and support to heart patients and their families.”

    Hospital of the Year award

    Dr. Larry Markham, chief of the division of pediatric cardiology at Riley, couldn’t be more pleased, especially considering the Central Region includes hospitals in several surrounding states, including Ohio, Michigan, Kentucky, West Virginia and western Pennsylvania.

    “Anytime you’re recognized by a patient or family organization as a team that stands out, it’s just validation that you’re on the right path, paying attention to families and providing the care they expect,” Dr. Markham said.

    Mended Little Hearts is a nationwide organization that supports and advocates for pediatric patients with congenital heart defects.

    The group’s Indianapolis chapter sponsors family events, educational opportunities and toy giveaways, including its Bravery Bag and Bravery Chest programs.

    When a child is diagnosed with a congenital heart defect, parents and caregivers often feel very alone. Their world has been rocked. But Riley has partnered with Mended Little Hearts to change that.

    “THERE IS SOMETHING WRONG WITH HIS HEART”

    Ronda Adamo knows that firsthand. Nearly seven years ago, the Garrett, Indiana, grandmother and her family were reeling from the news that her grandson, Brandon Halsey, was born with multiple heart defects and had to be airlifted to Riley.

    Brandon Halsey smileys for a photo

    Adamo wrote about that experience, sharing an excerpt here:

    “It was around 2 a.m. when we heard the words that forever changed our lives. ‘There is something wrong with his heart.’ The doctor in CVICU at Riley brought in a drawing of his heart and sat with us for what felt like hours, explaining his complex heart, answering our questions, guiding us on where to find more information, (explaining) risks and possible treatments/surgeries that Brandon would need.”

    Adamo recalls how she and her family were looking for support resources “because we just felt so alone,” and learned about Mended Little Hearts, the pediatric offspring of Mended Hearts.

    The Indianapolis chapter was small at the time, she said, but the organization sent the family one of its Bravery Bags, filled with snacks, toys, books and toiletry items.

    “I watched my daughter-in-law open the bag and she was crying,” Adamo said. “It’s the little things that mean so much.”

    Adamo became involved with the Mended Little Hearts organization as a volunteer six years ago and has continued her support as a coordinator over the years.

    When she learned about the award program, she knew she had to nominate Riley, the place where her grandson has received most of his care, managed by cardiologist Dr. Adam Kean. But it’s her work with Mended Little Hearts that really opened her eyes to the whole Riley team, especially during the pandemic.

    “THANK YOU IS NOT ENOUGH”

    “Working with the nurses and Child Life and the Cheer Guild was amazing,” Adamo said. “They were always able to find a way to let us help. We can provide resources for peer-to-peer support, educational opportunities for parents and toys for the Echo lab.”

    With COVID, it became a challenge to continue their work because they could no longer visit the Heart Center in person with their toy donations and Bravery Bags, Adamo said, “but Riley found ways to help us provide that support.”

    “I thought that was amazing, when so many organizations just said no,” she said.

    “They allowed us to continue our work in a way that was safe for the children and still provided needed support to families dealing with congenital heart disease. And I wanted those people at Riley to be recognized. Thank you is not enough,” Adamo said.

    She couldn’t deliver that thank you in person this week, but her appreciation was shared with team members who gathered for a group photo with the “Best Hospital” plaque just outside the Heart Center.

    "Best Hospital" plaque

    Alisha Cook, a nurse navigator on the heart unit at Riley, said she and the entire team are thankful for Mended Little Hearts.

    “They bring an aspect of connection to families that we as nurses and providers aren’t able to outside of the hospital,” Cook said. “They connect them to other parents, other resources, and they make it a little more personalized.”

    Nancy Kehlenbrink, pediatric cardiac sonographer, said Mended Little Hearts has been very generous with the echocardiogram lab, providing toys to keep little ones amused while undergoing testing.

    “Even 20-year-old kids would ask, ‘Do you still have the toy drawer,’” Kehlenbrink laughed. “And we didn’t, but now we do because Mended Little Hearts has been so generous. Every three months we get huge donations. Even the older kids like to get something.”

    While she doesn’t get to look in someone’s eyes at Riley and tell them how much they mean to her and to all the families they’ve helped to support, Adamo said she is grateful that they know they are appreciated, even if it’s with a small plaque.

    “We wanted to recognize the people who make our program successful. They meet us at the curb for carloads of toys, they inspect the toys, and they hand out the toys and Bravery Bags. They are grateful to us, and we are grateful for them,” she said.

    “Aside from the support of our organization, our group of heart families has watched as nurses, doctors, child life and support departments have helped our warriors in so many ways,” she added. “I know I am not the only one who fully believes they not only save lives, but they mend hearts, physically and emotionally.”

    The little boy who got her started on her journey with Mended Little Hearts is approaching his seventh birthday and is doing well today despite some developmental delays related to his illness, she said.

    “He amazes me. He has the most incredible spirit, and he never gives up.”

    A heart warrior indeed.

    Riley’s cardiology and heart surgery department currently ranks fifth in the nation on the U.S. News & World Report hospital rankings report. It is the Midwest’s top-ranked hospital for children’s heart care.

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/11-year-old-is-the-first-riley-patient-to-have-this-rare-procedure 11-year-old is the first Riley patient to have this rare procedure 2021-08-23T12:44:00-04:00 2022-03-25T13:38:32-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Haiden Taylor hasn’t had the easiest life. The 11-year-old has been in and out of the hospital for years, dealing with cystic fibrosis and chronic pancreatitis.

    Pain has been her constant companion.

    But now, thanks to the efforts of a multidisciplinary team of doctors, nurses and specialists at Riley Hospital for Children, she has a little bit of hope.

    Haiden underwent a rare two-part surgery earlier this summer to relieve her near-constant pain while also managing her body’s ability to produce insulin.

    It’s called a total pancreatectomy with islet auto transplantation. TPIAT for short. And she is the first pediatric patient within IU Health to have it done.

    DEBILITATING DISEASE

    Chronic pancreatitis is an inflammatory disease that leads to scarring of the pancreas, increasing levels of pain and repeated hospitalizations. The pancreas is important because it regulates digestion and sugar levels in the body, so although it can be removed to alleviate pain, people are left without the cells that make insulin and other hormones that help maintain safe blood sugar levels. These people develop diabetes.

    Haiden with her mother Megen Taylor

    In Haiden’s case, doctors, in consultation with her parents, Billy and Megen Taylor, felt that removing her pancreas was the best option. The important part for her is that it does not have to mean a life of insulin shots. That’s where the islet auto transplantation comes in.

    Dr. Nicholas Zyromski performed the operation to remove her pancreas (the source of her pain), gall bladder and part of her small intestine, then reconstructed her digestive system. A lab team isolated her insulin-producing cells from the pancreas, and the next day, the interventional radiology team at IU Health University Hospital reinfused her islet cells into her liver.

    The hope is that they will produce enough insulin to help her lead a normal life. There’s no guarantee, but the procedure has worked in adults within IU Health and elsewhere.

    Pediatric gastroenterologist Dr. Brian McFerron said typically a year out from the procedure, a third of patients may require insulin, a third may require a little with meals, and a third may require none.

    “It’s been a very tough road for Haiden,” he said. “Chronic pancreatitis can be debilitating. This procedure is a way of hopefully giving her a chance at leading a normal life.”

    FAMILY MOVED TO BE CLOSER TO RILEY

    Haiden’s chronic pancreatitis had reached the point where there were no additional interventions to control her pain or to stop the ongoing inflammation and scarring in her pancreas, Dr. McFerron said.

    “We met with the family numerous times, and they had done plenty of research and knew what the procedure entailed. We all agreed to proceed.”

    Haiden laying down smiling

    Haiden’s family was so committed that they moved from southern Illinois to Indianapolis to be closer to Riley, he said.

    “We were honored by that. We have all the pieces in place for the team it takes to successfully do this procedure,” Dr. McFerron said, “including preoperative evaluation, surgery, the transplantation and close follow-up afterward. It takes a very large team – surgery, GI, pulmonology, endocrinology, dietitians, pain management, mental health services and critical care. All of those people played a role.”

    Dr. Zyromski agrees: “We are able to deliver this type of high-quality, high-complexity care in the setting of a functional multidisciplinary team.”

    Haiden was hospitalized for 23 days in June at Riley, before and after the surgery. She went home for about a week, then returned for a week mostly due to abdominal discomfort, her mom said. That back and forth is lessening now, and Haiden was at Riley a couple of weeks ago for a checkup with pediatric endocrinologist Dr. Juan Sanchez, one of her many doctors and among her favorites, her mom said.

    “He’s awesome,” she said.

    Another favorite is Dr. Molly Bozic, a pediatric gastroenterology specialist.

    “We have a list of doctors a mile long,” Megen said. “We have met a lot of special nurses, too.”

    Haiden hopes one day to be one of those nurses. At Riley, of course.

    STRONG AND WISE

    The sixth-grader was pulling an IV pole around with her in the lobby of Riley’s Simon Family Tower earlier this month, something she is used to doing. She can eat, but it’s not always easy. The IV pumps formula into her thin frame to bump up her nutritional intake.

    She is wearing a shirt made by her aunt that says, “Pancreatitis survivor – It’s not for the weak.” Next to her, Megen wears a shirt with the message “Cystic Fibrosis Awareness.”

    Haiden looks out the window at Riley Children's Health

    “She’s the strongest, kindest child I have ever met,” Megen says of her daughter. “She’s like an old soul, wise beyond her years. Sometimes you wouldn’t know anything is wrong with her.”

    She’s human though, and when the pain flares up, her spirits can sag. Counseling services, part of that multidisciplinary team approach, take the edge off and help her navigate her illness.

    She doesn’t let it keep her down for long, her mom said. The family which includes Haiden’s two brothers, goes camping and boating nearly every weekend. Haiden also likes to ride dirt bikes, play video games and bake cookies.

    HOPEFUL SIGNS

    It’s too soon to tell how well her body will adjust post-surgery, but doctors are encouraged by her progress.

    “She is doing well. She is progressing as we would expect, and we are certainly hopeful,” Dr. McFerron said.

    Chronic pancreatitis is a challenging disease to treat, Dr. Zyromski explained. It most often afflicts adults who have abused alcohol or are cigarette smokers.

    “There is a very small percentage of chronic pancreatitis patients whose disease stems from a genetic mutation. Haiden is one of those patients,” he said. “The treatment of this disease is extremely challenging. There’s no medical therapy, and in fact surgical therapy aims to treat the consequences of the disease. Haiden’s situation is that she has a variant that we call small duct pancreatitis and the treatment for that is removing the entire pancreas. TPIAT is accepted as standard therapy for very highly select patients with chronic pancreatitis and for sure patients with a genetic predisposition like Haiden has.”

    The surgery protocol, developed in the 1970s at the University of Minnesota, is done in only a handful of medical centers in the country, including IU Health.

    Dr. Zyromski said he saw Haiden a few weeks ago, and she definitely is improving, though it will take several months to see if the islet cells transplanted to her liver will produce more insulin.

    “Her sugar regulation has been quite good,” he said. “The endocrine team at Riley is helping take care of that. She’s got a long way to go, but I think she’s going to be OK.”

    Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

    ]]>
    https://www.rileychildrens.org/connections/three-year-old-cancer-patient-meets-the-woman-who-saved-his-life Three-year-old cancer patient meets the woman who saved his life 2021-08-19T14:11:00-04:00 2022-04-11T14:34:30-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Jeff and Kaylie Parry knew it would take a home run in medicine, plenty of prayers and a dose of good luck if they were ever to see their little boy grow up.

    At the time, Jacob Parry was just a baby. A baby battling one of the most aggressive cases of acute myeloid leukemia that doctors at Riley Hospital for Children had ever seen as they prepped him for a stem cell transplant.

    With the help of their cancer care team at Riley, including Dr. Jodi Skiles, director of pediatric stem cell transplant and cellular therapy, and Audrey Hopper, stem cell transplant nurse coordinator, they swung for the fences, and last weekend their victory played out on the field of a minor league baseball team hundreds of miles from home.

    If you’ve ever seen the movie “A League of Their Own,” you’re familiar with the expression, “There’s no crying in baseball!”

    But there was plenty of crying on the Massachusetts baseball diamond when the Parry family got to meet their personal hero – the woman who saved their son’s life.

    Jacob Parry

    “WE ARE SO VERY BLESSED”

    Jeff and Kaylie and their three sons, 5-year-old Jackson and 3-year-old twins Jared and Jacob, made their way from Bremen, Indiana, to Worcester, Massachusetts, last week to meet Rachel Buck, who donated bone marrow to save Jacob two years ago.

    Just before that meeting, Kaylie spoke on the phone about what it would mean to lay eyes on Rachel for the first time.

    “Prepare for me to ugly cry on the jumbotron,” she laughed, as her boys lay sleeping nearby.

    She and her husband don’t seek the spotlight, so the idea of media covering this event was definitely out of their comfort zone. But they only had to look at Jacob to see that it was all worthwhile, not just for them but perhaps for another child who could be saved.

    “We prayed about it a lot, and we want to do it to help another family,” Kaylie said. “I want to cry right now just thinking about meeting her.”

    Kaylie did just that when Rachel bounded onto the diamond after being introduced by former Villanova University football coach Andy Talley, founder of Get in the Game. The nonprofit leverages the power of college athletics to recruit potential bone marrow donors for Be The Match.

    Jacob Parry

    There were a lot of tears that day on the pitcher’s mound as Kaylie and Rachel hugged and Jacob got to meet his personal superhero.

    “It was amazing,” Kaylie said later, still feeling the high from the weekend. “There really are no words. We are so very blessed.”

    Three-year-old Jacob was nonplussed by the fanfare, but he did enjoy playing in the dirt after the game. And that is one measure of just how far he has come since the summer of 2019.

    THE FIGHT OF HIS LIFE

    Jacob was diagnosed with leukemia when he was just a baby. He went through chemotherapy at Riley in preparation for a stem cell transplant in the summer of 2019. But he needed a donor.

    His parents, Jeff and Kaylie, were 50% matches, as was his older brother, Jackson. His twin (not identical) was a 0 out of 10 match. Enter Rachel, who had registered with Be The Match as a student on the campus of the University of New Haven in Connecticut. It took just a couple minutes to have her cheek swabbed and her information entered in the database.

    “Cancer has struck my family, as it has so many others,” she said, “so I thought, why not register? What are the odds I’m going to get picked?”

    It was some months later when she got the call that she was a 100% match for a little boy in Indiana. At the time, she was a senior in college. She could have backed out, but with the support of her family, she stepped up big time.

    Even when Jacob had to have another round of chemo in the summer of 2019 and the timing for Rachel’s donation had to be pushed back to just days before her 22nd birthday, she was unwavering.

    Scheduling can sometimes be the hardest part of matching donors and recipients, Dr. Skiles said.

    “Rachel is clearly a hero because she was willing to do this. When we have unrelated donors that match through the registry, it is often a battle to get a schedule put together on a calendar that works with the donor’s schedule,” she said. “That can be really hard on the patient, who is at the will of whatever their leukemia or cancer chooses to do.”

    Rachel, now 23 and a med tech in the microbiology lab at Tufts Medical Center in Boston, was different, Dr. Skiles said.

    “From the word go, she was all in, whatever we needed, whenever we needed it. She is amazing, truly lovely in every way. It’s not often that you meet a 23-year-old who has a real sense of the world around them.”

    “HOW COULD WE HAVE MISSED THIS?”

    Dr. Skiles flew to Boston over the weekend for the meeting between the Parrys and Rachel, who was accompanied by her extended family, her fiancé and his family. Transplant coordinator Audrey Hopper drove out with her 11-year-old son, Wade, a huge baseball fan.

    Jacob Parry

    “I brought my son so I could share with him some of the reasons why mommy’s busy sometimes,” said Hopper, who works long hours coordinating procedures and advocating for patients at Riley.

    While it wasn’t easy to get away, it’s important to celebrate the wins, she said, and to encourage more people to add their names to the registry. Appropriately, a registry event for Be The Match took place during the baseball game as well.

    “We need everyone to be on the bone marrow registry, especially people of different ethnicities and backgrounds,” Hopper said. “We need help because these kids have amazing lives to live.”

    Reflecting on the weekend, Dr. Skiles said she knew it wasn’t necessary that she be there, but she and Hopper really wanted to find a way to make the trip.

    After it was over, both realized how very much it meant to them personally and professionally.

    “How could we have missed this,” Dr. Skiles said, noting how emotional it was to meet Rachel and to reunite with Jacob, his parents and his extended family, two years post-transplant.

    “It was fun to be with them in this setting where we just get to enjoy them as people instead of in the mode of medical care,” she said. “And Jacob looks amazing, like a normal, healthy boy.”

    One of the most striking moments for her was after the game when she and others were gathered around a tent and Jacob was sitting on the ground, playing in the dirt. Rachel sat down right next to him.

    Two years ago, he couldn’t have done that, Dr. Skiles said. It was too risky. The fear of germs was always on his parents’ minds.

    But in that moment, the realization that it was Rachel’s immune system protecting him gave both her and Hopper chills.

    “It was such a great opportunity to appreciate the fruits of our labor that we don’t often get to see.”

    BETTER THAN A WEDDING

    For Rachel, the weekend was magical.

    “My wedding day is not even going to top this,” she said. “My fiancé already knows that. The whole weekend, looking back, it still feels almost like a fever dream. I can’t believe it happened. I can’t believe that I got to meet this insanely strong little boy and his family.”

    And now their family has become her family, she said. It’s been an emotional ride.

    “Jacob barely had a year on the planet and had to fight one of the hardest fights of anyone’s life,” she said. “And now he can go to preschool and he can learn how to ride a bike and he can play baseball and learn to drive a car when he gets older, things that people who are healthy take for granted.”

    And he and his family can come to her wedding in 2023.

    “They are definitely getting an invite!”

    She wants people to know that when you donate bone marrow (a procedure that required her to spend a day at an East Coast hospital), you’re not just changing one person’s life.

    “It’s his family, his community, the doctors and nurses at the hospitals. If Jackson and Jared grew up without their brother, that changes their lives. To take a day off to go in for a procedure, it’s so rewarding I can’t even think of anything better.”

    ABC News thought so too, featuring the story on its “America Strong” segment over the weekend.

    For Kaylie and Jeff, strength has been a hallmark of their fight. And they’ve gained that strength through their “village” – family, friends, doctors, nurses, and yes, strangers like Rachel, who now is very much a part of their family, too.

    Jacob Parry

    “Jeff and I are very certain that God has kept Jacob on this Earth for a reason, Kaylie said. “We have no doubt that this team was handpicked to be in our lives. It is obviously a God thing. Dr. Skiles and the whole team has become family. It’s such an awesome feeling to know that you’re not just a number, you’re a part of this group, and they treat you the same as they would treat their kids.”

    “TOMORROW I’LL BE BRAVE”

    Kaylie remembers all too well the darkest days at Riley when Jacob’s health was so critical. Shortly after the transplant, the Riley team received a book meant for the family and sent by their then-anonymous donor (Rachel) to Be The Match.

    The book is “Tomorrow I’ll Be Brave,” by Jessica Hische. In an emotional scene captured on video, Dr. Skiles, Hopper and others take turns reading from the book as Jeff and Kaylie sit next to Jacob’s bed at Riley while he sleeps.

    “There was not a dry eye in the room,” Kaylie said. “I knew then it was going to be a very special relationship.”

    Jacob Parry

    Jacob received his stem cell transplant at Riley Hospital on Sept. 20, 2019. He was hospitalized for seven months and nearly didn’t survive, but today he is a healthy little boy.

    “He loves to run and play with his brothers, he loves to be outside, and if he could play in the dirt every day, he would,” his mom said. “He goes wild over Mickey Mouse. He’s just the sweetest little thing.”

    While his twin’s nickname is “Bam-Bam,” Kaylie said Jacob is gentler, a boy who has always loved to cuddle. That connection helped them get through the worst days.

    “He loves to hold my thumb. We did that a lot when he was in the ICU and I would wrap his hand around my thumb just to let him know I was there. As a baby, he would let you rock him for hours. When your child is sick and hooked up to an IV pole, you spend a lot of time sitting and rocking.”

    The Parry family hopes their story inspires others to register to become bone marrow donors at bethematch.org.

    Related:

    ABC News: Young boy meets lifesaving donor - Jacob Parry spent 194 days in the hospital before receiving a bone marrow transplant from a stranger.

    ]]>
    https://www.rileychildrens.org/connections/new-dialysis-machines-for-tiny-patients-are-a-game-changer New dialysis machines for tiny patients are a “game changer” 2021-08-18T08:07:00-04:00 2022-04-04T09:53:36-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Some of the smallest patients at Riley Hospital for Children now have one more medical advancement going for them.

    It’s a “state-of-the-art” dialysis system that is offered at only about a dozen pediatric hospitals in North America, and Riley is among that select few, according to Dr. David Hains, Riley’s chief of pediatric nephrology.

    Riley Children's Health new dialysis system

    “Whenever we want to do dialysis in the ICU, we have a number of challenges,” he said. “We have machines that require very high blood flow rates, which is fine in an adult or older kiddo, but in babies it can be a real challenge. And now we have this teeny, tiny machine that can do some low-level dialysis, can pull fluid very easily and has simplified the entire process.”

    “A game changer” is how Dr. Michelle Casey Starr describes the three new machines at Riley that offer a gentler, safer alternative to large, high-flow machines.

    Dr. Starr is a pediatric nephrologist and clinical lead for the new program at Riley, which went online April 30. She arrived in Indianapolis two years ago from a fellowship at Seattle Children’s, the second pediatric hospital in the country to roll out the Aquadex Flex Flow System for use in infants.

    “One of the reasons I was asked to come here was to help bring this program here,” she said. “I was really excited because it’s a huge benefit for a lot of our patients.”

    The product itself is not new. It has traditionally been used to remove excess fluid from adult heart failure patients, Dr. Starr said.

    “One of the many challenges in pediatric critical care and pediatric nephrology is that a lot of the technology we use is adult technology that we adapt to children. That’s especially the case with dialysis,” she said.

    “So that means using big dialysis machines on very, very small patients and that’s very challenging for a variety of reasons. This is a much smaller machine, which means it’s much better tolerated in our smaller patients. It’s allowed us to dialyze smaller patients with fewer complications and more clinical stability.”

    For comparison’s sake, a typical dialysis machine is about 3 feet tall, 19 inches deep and 1½ feet wide and can weigh up to 300 pounds. The new machines are about a foot tall and wide and come on a rolling pedestal.

    Typically, patients are hooked up to the device continuously for several days or even weeks at a time, until their kidneys recover or they can be transitioned to peritoneal dialysis or another long-term option, Dr. Starr said.

    The smallest NICU baby dialyzed with the new machine to date at Riley was 2 kilos, or about 4.6 pounds, she added.

    With traditional dialysis machines, the benefits would not outweigh the risks in patients smaller than 4 or 5 kilograms (8-11 pounds).

    “We couldn’t have tried regular dialysis with our smallest kiddos, but now we can.”

    PICU nurses work with the machines

    Dr. Mara Nitu, pediatric critical care division chief at Riley, said a group of specially trained nurses in the PICU and CVICU run the machines. A NICU baby might receive dialysis in the cardiovascular intensive care unit if he or she had a heart problem in conjunction with renal failure, or come to the PICU if the reason for dialysis stems from sepsis or another serious infection that can attack the kidneys.

    “It’s a new machine, and it opens a whole new array of possibilities for tinier babies with congenital heart disease, or tinier babies with sepsis in the PICU or even tiny babies in the NICU,” she said. “We are developing protocols and practice guidelines, and we are very excited.”

    The smaller machines operate with a much lower blood flow, as mentioned by Dr. Hains, and patients require a smaller central line, or dialysis catheter, so they typically don’t need a blood thinner to prevent blood clots.

    For now, the team is in the ramping-up phase, Dr. Nitu said, troubleshooting new scenarios as they come along.

    “We are learning very fast and becoming better and better. We think there are a lot of new opportunities to take care of patients.”

    Kristen Freeman is among those specially trained CCRT (continuous renal replacement therapy) nurses in the PICU who see firsthand the benefits of the new system.

    “It has been exciting to learn this new machine and adapt it to our patient population,” she said, adding that the Aquadex allows the staff to improve patient outcomes with less invasive interventions, including large dialysis catheters. It’s also easy to move around.

    “From a nursing perspective, this machine is ideal for mobilizing patients and traveling to procedures around the hospital,” Freeman said. “It's smaller, it's on wheels, and it does not have to be continuously plugged in.”

    Dr. Starr said the investment in the new machines reflects Riley’s commitment to provide the therapy necessary “to care for our sickest and our smallest patients.”

    “It’s a really exciting time in pediatric critical care nephrology because there are a lot of different things coming down the pike,” she said.

    Seeing the new dialysis technology come to fruition is a testament to the multidisciplinary team approach Riley has to patient care, say both Dr. Starr and Dr. Hains.

    “Watching this has been really exciting,” Dr. Hains said. “Seeing everybody work together – pharmacy, supply chain, engineering, nursing, nephrology and critical care – we all have to be on the same page to do this.”

    ]]>
    https://www.rileychildrens.org/connections/podcast-maternity-matters-riley-midwives-provide-another-option-for-expectant-parents PODCAST: Maternity Matters - Riley midwives provide another option for expectant parents 2021-08-16T09:53:00-04:00 2021-08-16T09:57:21-04:00 ]]> https://www.rileychildrens.org/connections/starting-kindergarten-with-a-new-heart-and-a-dazzling-smile Starting kindergarten with a new heart and a dazzling smile 2021-08-15T15:12:00-04:00 2022-03-25T13:27:53-04:00 By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org

    Mariah Gavia-Locke had to wonder if this day would ever come. Sure enough, it was her baby girl’s first day of kindergarten.

    Five-year-old Makayla Owens brought more than a new backpack and mask to school that day. She brought along her new heart.

    Mariah Gavia-Locke with Makayla embracing

    Makayla received a heart transplant Oct. 8, 2020, at Riley Hospital for Children. Dr. Mark Turrentine was her surgeon. It was the culmination of a long wait for the young girl, who was born with multiple heart defects.

    She was just 3 when she arrived at Riley in July 2019 to prepare for a transplant, and she didn’t go home again until Feb. 27, 2021. Two birthdays, two Halloweens, two Thanksgivings and two Christmases. All spent in the hospital.

    Since that February discharge day, she has been working with therapists at home to get stronger and to walk independently.

    When we visited with Makayla last week, she was getting home from all-day kindergarten at Edison School for the Arts in Downtown Indianapolis, the same school her older brother and sister attend.