Truly Making a Home for a Young GI/Liver Patient

kyre porter with nurse
Photo by David Christopher

Kyre Porter and Kelley Haughn, RN
By Ankur Thakkar

For most young toddlers, a trip to the hospital can be a strange experience, filled with unfamiliar faces, long corridors and new smells. For 2-year-old Kyre Porter, it’s the outside world that is unfamiliar. Kyre has lived at Comer Children’s Hospital at the University of Chicago for 14 months, more than half of his life.

Kyre was born prematurely at 34 weeks at John H. Stroger Jr. Hospital on February 29, 2008, with a perforated small intestine. A sizable portion of his bowel was removed as a result, and he was unable to keep up with his nutritional needs through normal methods, so he was given total parenteral nutrition (TPN). His liver eventually rejected the line, causing cirrhosis. He was transferred to Comer Children’s Hospital in January 2009 to manage a bleeding stomach ulcer and to be evaluated for a liver and small bowel transplant. Comer Children’s Hospital has been his home ever since.

Kyre, "Ky Ky" or "Ky-monster," depending on whom you ask, sleeps on a 6-foot-tall crib with high bars and colorful sheets. There is a CD boombox on his nightstand, with a stack of educational sing-along discs. Many of the items along his window — more than 15 stuffed animals, coloring books, balls and a toy guitar — were purchased by the Children’s Hospital Floor Five staff, who use these toys to teach Kyre as they treat him.

“Every time I come in he knows a new word, which he will repeat until he owns it,” said Kelley Haughn, RN, a Comer Five staff nurse.

When Kyre first moved onto the floor, he was incredibly skinny with a protruding, rock-hard belly. His diseased liver had grown large because it wasn’t functioning. Haughn was warned not to get too attached to Kyre because of how sick he was.

“I didn’t care then, and I don’t care now,” Haughn replied, shaking her head. “I don’t want him to think that no one cares about him after his family leaves for the day. We love him. And I know that he knows that.”

Haughn and fellow nurse Jenny Ty, RN, are known among the staff as having unofficially adopted Kyre. The two, who are also good friends, visit Kyre on their days off, wash his clothes for him and are among the first to be contacted with his updates. They ensure that his crib has its own blankets and have decorated the room with pictures of Kyre and his family. Kyre’s mother, Artina Sutton, playfully scolds them for buying him so many presents.

“Oh wow, Kelley, Jenny and the entire medical team are tremendous,” Sutton said. “They’re basically just like me, always concerned about him. Kyre is very much loved.”

Haughn works the night shift, and gets about an hour to play with Kyre until his bedtime. One recent Thursday night, Haughn walked in and asked the nursing assistant how Kyre was doing. Kyre, who’d had a fever all day, was irritated and not cooperating with a diaper change. He perked up at the sound of Haughn’s voice. She reached down to help the assistant. Kyre and Haughn locked eyes and soon both had smiles on their faces as she cleaned him. He grabbed a baby wipe and waved it in front of her. “Thank you for trying to help ‘Ky Ky,’” Haughn laughed. “Really, I appreciate it, but I’m good.”

A nursing assistant is required in Kyre’s room 24 hours a day, because of the lines he depends on for nutrition and survival. In March 2009, Kyre had a living-donor liver transplant, however it was impossible to hook up the biliary ducts to his very short small bowel. Kyre has been affixed with a biliary drain until he gets the small bowel transplant. Along with this, Kyre is always connected to a permanent central IV access line and a gastric feeding tube (g-tube) for his meals.

Kyre is curious about these lines. Very curious. He likes to pull them out, which can be a serious emergency. In the past two months he has managed to pull out his biliary drain and his g-tube. Both potentially dangerous incidents were resolved, thanks to the quick response of a staff used to Kyre’s antics.

The next step for Kyre is the living-donor small bowel transplant, which would be the first ever performed at the Medical Center. His father will be tested to see if he can donate a portion of his bowel. Since Kyre’s liver transplant, however, he developed another complication. His physician, Ruba Azzam, MD, medical director of the Pediatric Liver Transplant Program, found that Kyre developed post-transplant lymphoproliferative disease, in which lymphoid tissue is produced uncontrollably because of a compromised immune system. Azzam prescribed Rituximab to treat this condition, and if the therapy works, Kyre will be a candidate for surgery.

In the meantime, his enthusiasm and energy continue to win over the staff. “This kid is amazing,” Haughn said. “He’s always happy. Whether he’s coming from a procedure, from surgery or anything else, he’s up, wanting to hang out and dance.”

Kyre picked up his toy guitar, struck a note and danced, waving his arms from side to side. Then as his nurse was leaving, he blew her a kiss and held the guitar above his head. His T-shirt read: “Tough Act to Follow.”