Boy's wait for new lungs continues, day after day

Vancouver 9-year-old, his mother have been in Houston several months

By Marissa Harshman, Columbian health reporter

Published:

 

If you go

■ What: Benefit for Alex Campbell. Liberty Bible Church, which Alex and mom Mandy attend, is hosting the Father’s Day Friday Car Show to help the Campbells cover medical and other related expenses.

■ When: 4 p.m. Friday, June 13.

■ Where: Liberty Bible Church, 12401 N.E. Salmon Creek Ave., Vancouver.

■ Cost: Admission and food are free. Donations will be accepted. Raffle tickets for sale.

■ Contact: 360-574-9302 or lbnaz.org.

■ Other efforts:gofundme.com/ helpingalexcampbell.

Alex Campbell was added to the list of children in need of new lungs in early February. And nearly three months later, the 9-year-old Vancouver boy is still waiting.

"It could be in a day or in a year," said Alex's mother, Mandy Campbell. "We have no idea. None."

On Christmas Eve, Mandy learned her youngest child needed a double lung transplant. After weeks at Randall Children's Hospital at Legacy Emanuel in Portland, the mother and son were flown to Texas Children's Hospital in Houston.

There, Alex underwent numerous tests, exams and interviews with doctors, dietitians and psychologists. On Feb. 5, the hospital's transplant board voted to add Alex to the transplant list.

Mandy expected the decision, but she didn't expect his exact placement would be kept secret. Kids younger than 12 are placed in order based on who has been waiting longest, not by severity, she said.

"It was really upsetting," she said. "We have no idea where he was placed."

A couple of weeks after being added to the list, Alex came down with a cold. Then the phone call they'd been waiting for came in: A set of lungs was available. The cold, however, meant Alex couldn't undergo the transplant.

"It was devastating," Mandy said.

Since then, other lungs have become available, but none have been healthy enough for Alex, Mandy said. Meanwhile, Alex's health is getting progressively worse.

The once active, athletic boy now spends most of his time in a wheelchair or bed. Mandy has taken Alex to the zoo and a museum, but he hasn't felt well enough to enjoy the outings.

"You just feel helpless," Mandy said. "As a mother, you want to fix it and you have to watch your child get worse and feel worse, and there's nothing I can do."

Short of oxygen

Alex has a rare condition that prevents his blood from getting properly oxygenated. The condition, an abnormality caused by a genetic disorder of the blood vessels, leaves the fourth-grader with a dangerously low blood oxygen saturation level.

Normally, a person's oxygen saturation level is between 98 and 100 percent. When Alex lies flat in bed, not talking, his oxygen saturation is at about 75 percent — and that's with the supplemental oxygen he receives around the clock.

Two days a week, Alex has physical therapy, which mostly consists of walking. After two or three minutes, Alex's oxygen saturation is down to 45 percent, Mandy said.

The Houston hospital's lung transplant program is among the largest in the world. According to the hospital website, the program's median wait time is less than four months.

Mandy and Alex are staying at a Ronald McDonald House near the hospital while they wait for the transplant. Leaving behind family and friends has been tough on both of them.

"It's depressing being so far from home," Mandy said. "(Alex) has days where he cries and misses his family and seeing his friends. … His spirits have been down."

Alex's siblings — Taylor, 22; Aaliyah, 17; and Abel, 13 — have made a couple of trips from Vancouver to Houston to visit. But even after Alex gets the transplant, he and Mandy will have to stay in Houston for three months while Alex recovers.

Until then, they wait.

"The right time is going to come," Mandy said. "We keep praying everything is happening the way God wants it to. But it's very, very hard."

"We just pray," she said. "That's all we can do."