Beeper to signal new life

Asher McGirt and his mother, Janet, have unusual summer plans:

They're waiting for the sound of a beeper.

The beeper, when it vibrates and bleats, will signal that a set of lungs has been found for Asher, a sixth-grader at Moore Square Magnet School in Raleigh.

"It's strange, of course, because it means that we're waiting for a donor to ... well, die," Janet McGirt said.

But for Asher, who has been using a wheelchair and relying on bottled oxygen for 18 months, the new lungs will be a release from a dark prison.

A year ago, almost to the day, I wrote about Asher's graduation from elementary school -- a special ceremony held in the atrium at WakeMed to celebrate the end of fifth grade.

He celebrated this rite of passage at a hospital, rather than with the rest of his class at Poe Montessori, because he was still recovering from a devastating and nearly deadly bout of Stevens-Johnson syndrome.

Doctors aren't sure what causes the disease. Sometimes it's a virus; sometimes bacteria. But in its worst form, the disease essentially destroys all the mucous membranes in the body. In Asher's case, in less than two weeks he went from suffering cold symptoms to having to be put into an induced coma. He temporarily lost his sight.

The greatest long-term effect has been on Asher's lungs. The linings of his lungs are so terribly scarred that one lung doesn't work much at all, his mom told me.

At first it looked as if Asher might be able to be weaned from the oxygen, to begin walking more regularly again.

This spring, however, Asher's doctors determined that his lung function was deteriorating rather than improving.

Asher and his mother packed their bags and, on April 10, headed to Texas Children's Hospital in Houston.

That's where they are, still, sharing a room in a Ronald McDonald House near the hospital. Biding their time.

Asher spends his days playing with his Nintendo and playing Runescape on the computer.

Janet, who is self-employed as a German translator, is able to work some. She has read every paperback book (except the Nora Roberts) left behind by other families. She pines for her daughter, who remains in Raleigh with Janet's ex-husband.

When the lungs become available, things will move quickly. Within three hours, Asher will be admitted to the hospital and prepped for what doctors expect to be a 10-hour surgery.

The risks are significant, but the doctors are optimistic.

Texas Children's Hospital performs more pediatric lung transplants than any other hospital in the nation. And unlike children who suffer congenital lung diseases such as cystic fibrosis, Asher will essentially be cured by his transplant.

But the road ahead will not be easy. There is always the chance that Asher's body will reject the new lungs.

He and his mom will stay in Houston for three months following the surgery. Asher will remain on anti-rejection drugs, and sensitive to even the mildest colds and flus, for the rest of his life.

But whatever the challenges, the transplant is Asher's best hope. So he and his mother continue to wait. For a beeper to sound and a new life to begin.