EmailEmail
PrintPrint
Children's Home gives transplant patients dose of family
Wednesday, October 22, 2008
Family time

For a year, little Zachary Johnson never saw much of anything besides his parents, medical personnel and the ceiling over Bed 15 in an intensive care unit at Children's Hospital of Pittsburgh of UPMC.

"He never saw the sun," Brian Johnson said of his 2-year-old son, who didn't get to see his twin brother, Aidan, or new baby sister, Madeline, either.

That all changed on Aug. 28, when Zac, who had a multivisceral organ transplant April 24, was transferred to The Children's Home of Pittsburgh and Lemieux Family Center for his final 7 1/2 weeks of in-hospital recuperation.

"Now we take him outside every day," Mr. Johnson said last week. Zac is now being treated for an infection, but he's on track to be released next week from The Children's Home and return to the family's house in Severna Park, Md., just outside Annapolis.

"He gets a little bit of sunshine on his face," Mr. Johnson added. "He gets to see the branches and the leaves and the wind and just the normal things most people take for granted."

That is what hospitalization is like for infants and children up to age 21 who are lucky enough to be transferred to the home from neonatal or regular ICU wards to finish their recovery from premature births or other life-threatening ailments. Most are referred there under partnerships between the home and Magee-Womens, Children's, Western Pennsylvania and Allegheny General hospitals.

Except for the lack of an emergency room and surgical suites, the 28-bed home has all the acute-care equipment of a regular hospital. Staff includes 70 physicians covering a variety of specialties and subspecialties, and the same group of doctors a child had in ICU will care for him or her at the home. Children's transplant department is the most recent program to come on board; Zac is its first representative.

Zac came to Pittsburgh Sept. 1, 2007, in life-threatening liver failure that had been brought on by intravenous feeding. The IV feeding was necessary because Zac, who was born 7 weeks premature, had developed necrotizing enterocolitis, a condition, doctors told Mr. Johnson, that affects one of every 2,000 preemies. Better known as NEC, the disease kills off intestinal tissue and can be fatal in about half the preemie cases. Before Zac was flown to Pittsburgh, he had six bowel surgeries.

His fraternal twin, Aidan, never developed NEC and, Mr. Johnson said, is "running around" like any normal 2-year-old while Zac, whose development has been delayed by all the health problems, is "essentially ... a 2-year-old infant."

Along with all the standard hospital equipment, the home also has practically all the comforts of the patient's house: playrooms stocked with toys, living rooms complete with games-loaded computers, kitchens and dining rooms, laundries, and bedrooms for parents and the rest of their families. Huge windows, some of which overlook a medically safe playground and parklet, practically eliminate the need for electrical light.

And the home also is a kind of teaching hospital, though the students are not would-be doctors, but parents who need to learn such skills as how to suction out congested lungs or set a ventilator.

"It's sort of a hybrid between a house and a hospital," Mr. Johnson said.

"As soon as I walked in the door, I said our patients have to come here as soon as possible," said Dr. George Mazariegos, director of pediatric transplantation in the Hillman Center for Pediatric Transplantation at Children's.

Without it, the transplant patients would have to stay longer at Children's or transfer to local hospitals that might not be able to assume that kind of care very quickly, he said.

"I think the advantages [of the home] are it allows for increased patient and family interaction because the facility is set up to do that. Their staff is the same as it is at Children's Hospital and it allows continuity of care. It also frees up the acute hospital beds for kids more acute at Children's as well."

Zac was a good candidate for The Children's Home, Dr. Mazariegos said, because of his family's need to be trained on the ventilator and because his four new organs, especially the liver and bowels, are recovering well.

"The transition has gone very well," the surgeon added. "In terms of the clinical, he's making progress; he's not needed to be readmitted. He's making progress toward the goal of getting off the ventilator and having the family educated in his care. ...

"He clearly has had less need for IV levels to keep his fluid in balance, less medical support to keep the fluid balance in check." There also has been some improvement in a yeast infection that settled in his brain, Dr. Mazariegos said.

And there have been other improvements more readily observed by a parent who has spent many hours a day with the child, improvements that make the Johnsons hope he someday not too long from now will be running around like his brother.

"At Children's Hospital, we couldn't have his twin brother show up; extended family would come in; we couldn't have that home-type environment because it's an ICU setting," Mr. Johnson said. "But here we can have his brother come in, his sister come in. We can have our meals up here. We can watch TV. We can hang out. It's not like our living room at home, but it's a pretty good facsimile of it.

"So with all this mental stimulation he was getting we realized he was more and more aware. He was smiling more. He was looking around more. He was on a mental stage [where] he was getting much better and I attribute that to this environment here. ...

"Not to mention with his mental acuity, we see attitude, too, which is OK," Mr. Johnson said, laughing, after Zac objected to some lung cleaning. "But he's starting to grow hair now and his teeth are growing in and his nails are coming in more. We're just seeing growth in a lot more aspects.

"One thing here that we could not do at the ICU was sleep schedules, so now we have routines. The staff will give him a bath at a certain time. We put him to bed. We turn the lights off. We get him up pretty much the same time as we can in the morning. We try to get him out of bed. We start the day off as you would any other child. There are the advantages to being in this facility as opposed to an ICU setting.

"There," Mr. Johnson added, "they want to keep the child alive. Obviously that was what we needed for that time.

"But here we've moved past that and we want to nurture him, and they're very good for that here."

A Web site on Zac and his parents' experience can be found at cotaforzacj.com. Soon it will have a link to Mr. Johnson's print-on-demand book, "A View from Bed 15."

Pohla Smith can be reached at psmith@post-gazette.com or 412-263-1228.
First published on October 22, 2008 at 12:00 am
Featured Homes