June 30, 2023

Teen lung transplant patient goes home after six-month hospital stay

Kyleigh, a teen lung-transplant patient, being wheeled through hallway with staff celebrating her

MADISON, Wis. – Like nearly every 16-year-old girl, Kyleigh Williams is ready to start driving.

For now, she is happy to let someone else take the wheel and drive her home to Rock County following a six-month stay at American Family Children’s Hospital in Madison. During that time, she received a double-lung transplant and relearned how to eat and walk on her own.

“It was really scary being in the hospital and away from home this long,” Kyleigh Williams said. “I’m grateful the doctors and nurses were there to help me stay positive.”

On Thursday, her parents and care team gathered to celebrate her discharge from the hospital and the other milestones she missed while hospitalized.

“She’s a warrior,” said Nikki Williams, Kyleigh’s mother. “She spent her 16th birthday hooked up to machines but now she’s ready to enjoy summer like any other teenager.”

Kyleigh, who goes by Ky, was three weeks shy of her 16th birthday in December 2022, when she arrived at the emergency department at Beloit Memorial Hospital. She had developed a severe infection from influenza A. Shortly after arriving, her doctors determined she required more specialized care, and the medical team at UW Health Med Flight was called to transfer Ky to American Family Children’s Hospital, according to Dr. Craig Tschautscher, physician, UW Health Med Flight.

“We could see that her heart and lungs were rapidly deteriorating,” he said. “Our team was focused on getting her stable enough to survive the flight so we could get her to the higher level of care she needed.”

Within 20 minutes of her arrival, doctors in the pediatric intensive care unit, or PICU, at American Family Children’s Hospital determined that Ky’s heart and lungs were too weak to work on their own. She was put on extracorporeal membrane oxygenation, also called ECMO, a form of life support that provides time for the body to rest and recover by doing the work of the heart and lungs, according to Dr. Dan McCarthy, director of the UW Health ECMO Program, and associate professor of surgery, University of Wisconsin School of Medicine and Public Health.

“She was an active and healthy teen who came in with a very serious flu,” said McCarthy, who is also the surgical director of the UW Health Kids Lung Transplant Program. “We hoped by using ECMO, her body would have the right support to fight off the infection in her lungs so they could heal on their own.”

In addition to the influenza infection, Ky had developed necrotizing pneumonia, a complication of severe inflammation in the lung tissue. She was treated with antibiotics and placed on a ventilator to support her breathing and had a feeding tube inserted.
In late December, her kidneys began to fail, and she was placed on dialysis. Surgeons also performed a tracheostomy to create an opening in her trachea to enable her to stay on a ventilator long-term.

Throughout January, CT scans showed that the influenza infection had caused severe structural damage to Ky’s lungs, allowing bacterial infections to grow. This bacterial infection called Pseudomonas aeruginosa was becoming increasingly resistant to antibiotics, according to Dr. Erin Lowery, medical director of the UW Health Kids Lung Transplant Program, and associate professor of medicine, UW School of Medicine and Public Health.

“With each scan, we could see that her lungs were not going to recover, and we were running out of treatment options,” she said. “The clock was ticking, and we believed her best chance for recovery would be with a transplant.”

Ky was listed for a double-lung transplant on Feb. 1, 2023. She received a match of donor lungs on Feb. 9, 2023, and not a moment too soon, according to McCarthy, who led the team that performed the transplant at University Hospital. The surgery took more than 20 hours, while a snowstorm swirled outside.

“The infection had taken such a severe toll on her lungs making her one of the sickest patients I had ever operated on,” he said.

For the first month after her transplant, Ky recovered at University Hospital. While her care team monitored her body for signs of rejection, Ky worked with respiratory and physical therapists to adjust to her new lungs.

When Ky returned to the PICU in March, she remained connected to a ventilator to assist her breathing. She received regular visits from her parents as well as from Tschautscher, who formed a deep connection with the family. She also connected with her PICU nurses who would perform TikTok dances in her hospital room to help lift Ky’s spirits, according to her mom.

“The entire team was so dedicated to both her physical and mental health and I am thankful they went out of their way to make her smile,” Nikki said.

Ky’s care team determined she was healthy enough to be disconnected from ECMO and dialysis in March. April and May were dedicated to physical therapy, according to Lowery.

“She was motivated every single day to regain her muscle strength,” she said. “She had to start from the beginning, first working to hold her head up straight, then progressed to sitting, standing and eventually walking.”

In May, Ky’s care team determined her lungs were ready to work without support from a ventilator.

In June, her feeding tube was removed, which meant Ky could enjoy her favorite foods again. Her first order was macaroni and cheese. Ky also said farewell to her PICU team and moved to inpatient rehabilitation at American Family Children’s Hospital to continue building strength with her new lungs. Following three weeks of persistent work, Ky’s care team gave her the green light to go home at the end of June.

“Her transplant was a major accomplishment given how sick she was, and we are proud that we had the right combination of expertise here to successfully take her case on,” Lowery said. “We are excited to see Ky head home with her family and enjoy her life.”
Her journey home began with a familiar face, the same Med Flight physician who wheeled her into the hospital six months ago.

“I was privileged to be part of the team that brought her in, and I am honored she has allowed me to be part of the team that wheeled her out,” Tschautscher said.

On their departure, Nikki expressed her gratitude to the team who made this day possible as well as the anonymous donor who provided her daughter with an invaluable gift.

“We are so grateful to the donor and their family who provided our daughter a second chance at life,” Nikki said. “We’ll also never forget the care and compassion from everyone at UW Health during Ky’s 209 days in the hospital.”

Now that she is home, Ky will continue with outpatient rehabilitation. She is looking forward to spending quality time with her family and chocolate lab, Jade.

Ky is enrolled in summer school to keep her on track to begin her junior year of high school in the fall. Most importantly, Ky is just two classes away from taking the test to earn her driver’s license.

“I’m really looking forward to taking a drive in my own car, and just getting to finally cuddle with my dog,” Ky said. “I really missed iced coffee and can’t wait to get that whenever I want.”