Family contemplates heart and home as boy, 6, awaits transplant

IF GOD IS in prayer-answering mode, 6-year-old Weston Keeton will soon be sleeping in something other than a hospital bed.

It won't be his own bed, since home is in Tennessee. But it will be a welcome change from the one at Children's Hospital of Philadelphia, where he has lived for 17 months.

Back in June 2011, Weston's parents, Julie and Adam, had no idea that CHOP would be Weston's home for so long. All they knew was that their then-4-year-old, who'd undergone many surgeries to address multiple heart defects, had gotten very sick and needed to be seen by specialists at CHOP. So they packed up Weston and his five brothers and sisters and drove to Philly, expecting to return home in a week with a medical game plan.

Instead, they learned that Weston needed a new heart and lungs. And if he weren't admitted immediately to CHOP for stabilization, his prognosis was dire. Weston's wait for organs could be lengthy and, because his health was so fragile, he'd need to remain at CHOP until the transplant.

The news sent the family into free fall. Life for Adam and Julie - sweethearts who met at Julie's 21st birthday party (they are both now 30) - revolved around their family, which was about to get bigger: Julie was two months' pregnant. Moving the entire clan to Philly was out of the question, since Adam's job as a crane-and-boom-truck operator came with a good paycheck and health insurance they could not afford to lose.

So Julie stayed in Philly, eventually moving into the Gift of Life Family House, the new 30-room hotel at 4th and Callowhill streets for transplant patients and their families. The room rates are a pittance compared with city hotels'; for guests in real need, the rooms are often practically free.

In January, Julie gave birth to Ellie, and brought her "home" to Gift of Life.

"It's the only home she's ever known," says Julie, whose eldest child, Easton, 7, has joined her, Weston and the baby in Philly. Adam juggles work and child care in Tennessee with the help of family.

Julie and the kids spend their days at CHOP, where Weston's large, single room holds not just his bed but shelves of toys and books, a playpen and bassinet for the baby, and a work area for Easton, who is home-schooled. It is warm, colorful and friendly. And each CHOP staffer - medical people, social workers, child-life specialists - is more caring than the next.

But a hospital is not a home. Neither is the Gift of Life Family House, but it's close. Julie, Easton and Ellie share a large room there, and the house has ample amenities - a full kitchen, beautiful living areas and hot daily dinners - that at least mimic the best parts of home.

"If Weston could be with us at Gift of Life, things would feel more normal," says Julie. "I could rotate the other kids up here more often, because we wouldn't be spending every day at the hospital. They need Weston, they need me, we need them."

And Julie and Adam, it goes without saying, need one another.

When the family visited for Halloween, it was the first time all were together since July. The kids swarmed over Julie, hungry for their mom, and they scooped Ellie into their arms so often, she was overwhelmed.

"It was very hard when they left for home," says Julie quietly. "If we could get more time together, it would help all of us."

It's a tribute to Weston's superb care at CHOP that his health has stabilized enough that he is scheduled to be discharged next week to Gift of Life, armed with the medicines, oxygen, tubes and other medical accoutrements that keep him alive. He remains on a waiting list for a new heart and lungs.

On Wednesday, after hemming and hawing, Weston's insurer, Cigna, finally approved the cost of the pump devices he will need to receive care away from the hospital.

"Everything we have needed, there has been a holdup," says Julie. "And this is a good insurance plan."

The plan got better, she says, after Obamacare removed certain spending caps that, by now, would have sent the Keeton family into bankruptcy.

"Weston's medical bills are in the millions," Julie says. "Adam and I could work 24 hours a day, and we'd still never be able to pay it."

Now, though, is a time to ponder miracles, not impossibilities. Next week, Julie will bring her little boy to the Gift of Life Family House, read him a good-night story and tuck him into a normal bed, for the first time in 17 months.

Just like at home.

To help the Keeton family, go to http://cotaforwestonk.com