Archive for Wednesday, April 30, 2008

Local families thankful for organ donors

April 30, 2008

Editor's note: We are revisiting the stories of three Lawrence families whose lives have been affected by organ donations. They were featured in February. One of those families involves Heidi Karn Barker, who originally is from McLouth.

She's a little warrior.

At 18 months old, Addison Whitenight continues to fight for her life.

The blue-eyed, red-haired Lawrence girl was diagnosed with biliary atresia at age 6 weeks. Her liver doesn't work, and she's been waiting for a new one since last May.

Her illness has caused severe jaundice. She's on a feeding tube for 17 hours a day because she has trouble gaining weight and absorbing nutrients. In December, she developed rickets, a softening of the bones that can lead to deformity and fractures.

The waiting game is taking a toll on Addison and her parents, Shawna Davis and Jeffrey Whitenight, who also have a 4-year-old son, Cameron Whitenight.

"It's tough and tiring," Shawna said.

Two weeks ago, Addison fell off the couch and landed face first.

"She was on the couch and we had just put her feeding tube back in and Shawna turned her head just to grab a diaper off the back of the couch and she rolled right off," Jeffrey said.

Addison broke her left leg and left arm in two places. She was taken by ambulance to Children's Mercy Hospital in Kansas City, Mo., where they reset the bones and put her in a red-and-blue cast that covers her leg, arm and stomach. Her dad, a Jayhawk fan, picked the colors.

"I think her breaking her bones has definitely been a setback for her family and her," said Angela Tendick, hepatology program coordinator at Children's Mercy. "She's hanging in there."

While lying on a cushion on the living room floor, Addison was smiling and kicking her free leg.

She now wears two diapers instead of her usual size 3. She wears a size 1 that is tucked into the cast and a size 6 that goes over the cast.

Doctors expect her to be in the cast for another four weeks. Luckily, it doesn't affect her chances of getting a liver transplant.

"She's still at home and happy and playful and that's what we want," Tendick said. "This would be the perfect time to transplant her. We don't want her to be in the hospital and sick because that would make it all that much harder for her to recover."

Addison's parents just hope they don't have to go through another day like March 8.

At 11:40 a.m., Shawna received a call from Tendick. Addison was the backup for a liver transplant. She advised Shawna to take Addison off the feeding tube.

"Is it possible to shake out of your skin? I was shaking like crazy. I was so nervous," Shawna said, recalling the wait after the initial phone call.

About 5 p.m., Tendick called back and said it was a "no-go." The mother's heart sank. "I was definitely disappointed, but there was nothing that I could change."

Although the process is traumatic for families, Tendick said it is a necessary one. She said when an organ becomes available, not only are the first and second in line notified but also even the third and fourth. The quicker that patients are prepped and ready for a transplant, the better their chances are for a successful operation and recovery.

"It's very hard," Tendick said. "It's hard because you know what you're putting the families through by getting their hopes up, but unfortunately, it is part of it."

***

Heidi Karn Barker knows that waiting for a life-saving organ is tough. She's done it.

The 24-year-old Lawrence resident has cystic fibrosis, and before her double lung transplant in January at Barnes-Jewish Hospital in St. Louis she could barely breathe.

For the transplant, she packed up and moved to St. Louis, where she waited a month for new lungs and then spent three months recovering from the surgery. It meant time away from her husband, Brad Barker, family, friends and her two cats.

She returned home early this month and is feeling "really good."

"It's almost hard to believe it happened. It really was fast and the waiting time wasn't very long," Heidi said. "My recovery time was good. I mean I had some bumps but I was still able to come home within three months. Now, it is just thinking about people I know that are over there waiting."

The transplant has given her freedom - her life doesn't revolve around breathing treatments anymore - and energy.

"Right now I am happy cleaning," she said laughing. "Doing little things around the house makes me happy."

Her mother, Tracie Karn, of McLouth, said it's nice getting calls from Heidi asking about frosting recipes for chocolate cake.

"It's so joyful seeing her take delight in things like that - things that she just didn't feel like doing before the transplant," Karn said.

In July, Heidi plans to return to her job in Kansas University's international student office.

"I am a pretty happy girl," she said.

***

Lawrence residents Dan and Jill Blomgren also are happy these days.

Their sons, Miles, 9, and Aiden, 6, are full of energy, which wasn't always the case.

They were born with progressive familial intrahepatic cholestasis, an inherited disease that causes progressive jaundice and scarring of the liver.

The boys received liver transplants as toddlers at Children's Memorial Hospital in Chicago.

"They are both doing great," Jill said.

Miles is participating in a groundbreaking study where living donor recipients are gradually taken off anti-rejection drugs. Miles took his last drugs Dec. 26 and continues to do well.

A few weeks ago, one of his labs showed a number that concerned doctors. Miles traveled with his dad to Chicago, where he had a liver biopsy, but everything checked out fine.

"They are just keeping a close eye on him," Jill said.

Miles has lab work done every two weeks, while Aiden has lab work done every three months.

Both boys were given a thumbs-up during an annual checkup in February in Chicago. Aiden's anti-rejection medication was even cut in half.

This spring, the boys are playing soccer and riding their new bicycles. Their Christmas puppy also is keeping them busy.

"They are still loving her, and we are still trying to get through the obedience training," Jill said, laughing.

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