Weston gets a chance

AS SHE SAT with her son Weston after his surgery, Julie Keeton felt alarmed. His cheeks, lips and fingertips looked flushed with fever, and when he breathed, his chest barely moved up and down.

"Is he OK?" she asked a nurse at Children's Hospital of Philadelphia, where Weston, 7, had just undergone a heart and double-lung transplant.

"He's fine," the nurse told her. His skin only appeared flushed because his circulation was now normal. And he was taking fewer breaths because his healthy new lungs didn't need to gulp for air.

Julie laughed with wonderment. Toward the end of the 2 1/2 years that Weston had been on the organ-transplant waiting list, he had become so sick that his skin had taken on a bluish pallor that Keeton didn't realize she'd gotten used to seeing. And his lungs had weakened to a point where he didn't really breathe anymore - he panted.

Now, as Julie watched her rosy-colored son take gentle breaths, she noticed that his abdomen looked different, too. During his illness, his enlarged heart had crowded into his abdomen, pushing everything else outward, creating an old-man pot belly. Now, with a normal-sized heart in his chest, his stomach was flat again.

"He looked like a regular little boy," Julie says.

That's when it truly hit her that the wait was finally over. Weston had actually lived long enough to receive the heart and lungs that saved his life.

This is the third time I've written about Weston since he arrived in Philly in 2011. Can I just say it's the happiest "update" column I've ever written?

"I never thought this would happen," Julie says as Weston rests from his tricycle ride around CHOP's intensive-care unit as nurses and therapists wheeled his oxygen tank alongside. (He will be gradually weaned off the oxygen over the coming weeks.)

It has been a month since his surgery. Small setbacks notwithstanding, he is doing splendidly.

"You keep putting everything in God's hands," Julie says. "But you also try to prepare for the worst, too. After two years, you think, 'Maybe this is not meant to be.' You make peace with it. And then, you get a miracle."

The saga began in June 2011, when Weston, Julie, husband Adam and the couple's five other children traveled to CHOP from their home in Tennessee, where Weston was being treated for multiple heart defects. They thought the trip would last a week as Weston underwent an evaluation and then returned home with a new treatment protocol.

Instead, they learned that Weston needed a heart and double-lung transplant. The news was a blow. Life for Julie and Adam, both 32, revolved around their family, which was about to get bigger: Julie was two months' pregnant. Moving everyone 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 with Weston in Philly, first moving into the Gift of Life Family House, a 30-room hotel for transplant patients and their families, and then into an apartment.

During that time, Julie gave birth here to daughter Ellie. Oldest child Easton, 8, moved north to be with Julie and the baby and to keep Weston company (the brothers are best friends). The family reunited as often as possible, but some separations lasted months. Then, last spring, Weston was well enough to return to Tennessee for a month.

"We were all together - it was beautiful," Keeton says.

But in June, Weston's health took a nosedive. The family was told he had about six months to live with his weak heart. Julie and Adam moved all the kids to Philly to be with Weston.

"We wanted them to know their brother," she says. "He needed them and they needed him."

Julie and Adam did not expect Weston to survive. They planned his funeral many times, only to have him rebound, though weaker each time. And they decided not to resuscitate him if his heart or lungs failed.

Says Julie, "If it came to that, he deserved a peaceful death."

Then, on the evening of Dec. 11, came the call that a heart and lungs were available for Weston, and they were perfect. In fact, says Julie, the surgeon told her that they were the healthiest-looking organs he had ever seen for transplant. Early the next morning, as Adam sped north from Tennessee, Weston was wheeled into the O.R.

"It was so emotional," Julie says. "I was scared for Weston, and heartbroken for the donor's family. We were about to have the best Christmas ever, while another family would have the worst Christmas of their lives. All we could do was pray for them."

Since the surgery, Weston has had a few setbacks - a few infections, medication issues - but none have been unexpected. Each day, he feels stronger and happier. He is doing schoolwork with a tutor. Walking and biking laps around the ICU. Teasing his brother. If the miracles continue, he will be discharged to the apartment in a few weeks, then remain in Philly for six months as his progress is monitored.

And then, God willing, the family will return to Tennessee, together again.

This time for good.

Phone: 215-854-2217

On Twitter: @RonniePhilly

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