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