By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.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.”
“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.
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, email@example.com