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Published January 23 2013

Robin Huebner Reports: Wait continues for boy’s transplant

FARGO – The Fargo boy waiting for a double-lung transplant in Houston got the call he and his family were waiting for over the weekend, but it turned out to be a no go.

Ten-year-old Jordan Peterson is struggling with cystic fibrosis. His family relocated to Houston in October so they could be close to Texas Children’s Hospital for the surgery.

Their pager went off at 9:06 a.m. Sunday, notifying them of a potential set of lungs for Jordan.

“You want to talk about getting hearts racing,” said Jordan’s father, Dan Peterson.

“It was like the flight of the bumblebee,” he said.

Peterson said the potential donor was a 7-year-old girl who had suffered head trauma in a car crash.

But just 40 minutes later, they got a call back, saying doctors weren’t able to get oxygen levels in the donor’s lungs high enough, so they weren’t viable.

“It was disappointing,” said Peterson, and to Jordan in particular.

But it was something they were told happens about 20 percent of the time.

Meanwhile, the family is asking for positive thoughts and prayers because Jordan’s lung function has been dropping over the last few weeks.

Peterson said it was up to 29 percent at the beginning of January, but three weeks later, Jordan’s lung function is down to 21 percent.

“We’re not in total panic mode … he’s been there before,” Peterson said.

But it wasn’t the direction they were hoping for.

Doctors also found a new micro-bacterium in Jordan’s lungs, so he’s on a new round of antibiotics.

Jordan’s doctor considered hospitalizing him Tuesday, Peterson said, but since Jordan didn’t feel sick, they decided to watch him carefully and continue with checkups and therapy.

The family is living in their RV in Houston while waiting for the transplant, but their stay was recently made more comfortable.

Former North Dakota State University running back Chad Stark introduced the family to Bison Hall of Fame quarterback Jeff Bentrim at the recent football championship game in Frisco, Texas.

Bentrim and his wife have a home in Houston that’s up for sale, after they recently moved to Calgary, Alberta.

They heard Jordan’s story and wondered if the family wanted to stay in the house at no cost.

The Petersons accepted the offer.

But the family decided to stay in the Bentrim home only part of the week because it’s an hour’s drive to Texas Children’s, as opposed to a 12-minute drive from their RV.

“What a difference to be able to sit in a living room and stretch out, not having to be in such close confines,” Peterson said.

The family has been told the average wait time for a double-lung transplant is three to four months.

Just this week, Jordan reached the three-month mark since being put on the transplant list.

“Hopefully we’re entering that sweet spot,” Peterson said.


Readers can reach Forum reporter Robin Huebner at (701) 451-5607


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