Every cold season typically brings challenges for Bodi Johnson, a 5-year-old Western Kentucky boy with Down syndrome. His vulnerability to respiratory infections often leads to hospital stays, and November 2023 was no different.

Bodi was admitted to an Evansville, Indiana, hospital with a severe case of respiratory syncytial virus, also known as RSV. The infection took a heavy toll on his lungs, making breathing extremely difficult. Despite treatments to provide respiratory support for Bodi, his illness progressively became more severe, requiring him to be placed on a ventilator. Even at the highest settings, the ventilator couldn’t support Bodi’s oxygen needs.

With all other options exhausted, the medical team decided that extracorporeal membrane oxygenation (ECMO) was the only remaining solution. ECMO is a life-support technique used for severe heart or lung failure. In Bodi’s case, the hope was that it would give his lungs time to heal. Due to Bodi’s critical condition, he would need to be transported to Louisville for a higher level of care. Fortunately, the “Just for Kids” Transport Team offers specialized transportation for ECMO patients, and within a few hours, the Norton Children’s team was in Evansville, ready to transport Bodi to Louisville for specialized care.

Unexpected complications

Upon arrival at Norton Children’s Hospital, Bodi experienced complications that can come with ECMO support, specifically bleeding around the ECMO incision site. (ECMO requires blood-thinning medication, and bleeding can occur.) Bodi’s dedicated medical and surgical teams quickly intervened, stopping the bleeding while continuing ongoing ECMO support to rest his heart and lungs.

Despite this series of challenges, Bodi began showing signs of improvement. Exactly one month after arriving at Norton Children’s Hospital, he was able to be taken off ECMO. Three days later, he was strong enough to come off the ventilator. One week after that, he was discharged from the hospital — 40 days after being transported to Louisville.

His recovery was supported by a committed and exceptionally caring medical team, according to Alisson Fenwick, Bodi’s mother. Kelly A. Lyons, D.O., pediatric critical care physician with Norton Children’s Critical Care, affiliated with the UofL School of Medicine, made a huge difference in the family’s experience at the hospital, according to Alisson.

“The [pediatric intensive care unit] can be an intimidating and nerve-wracking place, but with Dr. Lyons, I always felt informed and included,” Alisson said. “During rounds, I stood in a circle with every care team member, and they explained everything to me — no matter how big or small. I truly felt like part of the team that was saving my boy’s life.”

Unwavering support during recovery

Bodi’s journey was made brighter by the compassion of his care team. One of his nurses, Joey, remained a bright light for the sick boy, according to Alisson.

“It felt like we had known Joey for years, even though we had just met. The dance parties, ice cream dates, and the immense love he showed Bodi were extraordinary,” she said. “Nurses like Joey redefine what it means to care. He will always be a core memory for our sweet Bodi.”

According to Alisson, the care Bodi received allowed her to find time to rest during such a stressful experience.

“The difference between Norton Children’s and any other hospital is unmatched. They provide a completely different peace of mind and comfort,” she said. “I felt so comfortable there and even felt OK leaving Bodi to get some sleep, because there were always at least two nurses with him at all times. They always included me in everything they did, which was unlike anything I’ve ever experienced before.”

Immense gratitude

Despite Bodi’s medical challenges, his vibrant spirit remains unshaken. He loves to dance, sing, run and jump — his boundless energy and joyful nature are a source of inspiration to everyone around him.

“Bodi is a little ball of energy who will do just about anything to make you smile and laugh,” Alisson said.

Reflecting on Bodi’s experience, Alisson shares a heartfelt message for other families grappling with the fear and anxiety that can consume parents when a child is critically sick: “Trust Norton Children’s. This is personal to them just as much as it is to you. My boy wouldn’t be here today if it weren’t for every single care team member we had. Each one, big role or small, did it wholeheartedly, and I will forever be thankful for them.”