Minnesota baby looks for kidney donor match
By Jeff Hansel
Rochester Post-Bulletin
Rochester, Minn. (AP)--Ryder Boggess has won the hearts of everyone around him. At 8-months-old, he has so far lived his entire life at Mayo Eugenio Litta Children's Hospital inside Mayo Clinic's Saint Marys Hospital.
His mother, Mandy LeBaugh, dreams of the day he'll go home for the first time.
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Whatever happens, each day gets handled to the best of his family's ability.
Ryder has survived eight surgeries, his mother has seen him near death and turn blue three times, and he gets dialysis treatments every 1.5 hours because his kidneys can't cleanse his blood like they should.
"He gets a break for about six hours when all his tubes aren't connected," said pediatric nurse Julia Jurgensen, one of the nurses who provide constant medical supervision.
"Music therapy comes a few times a week," said Ryder's grandmother, Linda LeBaugh. "They play music for him, let him play with the guitar."
Therapies are designed to help Ryder stay close to the developmental stages of babies his age.
LeBaugh says she and her mother talk about all the things Ryder faces "and we just take it one day at a time. We just do it together."
It's not easy.
Ryder was nearly never born at all.
His posting at MatchingDonors.com, where his mother is searching for an adult kidney donor, says "my bladder had ruptured and everything was going into my stomach. My mom was told to terminate me or wait it out. No baby has survived this kind of damage. My mom loved me so much that she waited. A week later she found out that my bladder was healing."
Today, eight months later, Ryder has a surgically formed drain under his belly button for urine so it doesn't back up into his kidneys. When he needs to have it drained, or when he needs a shot, "we just kind of stand around him and hold his hand and cuddle him a little," said his grandmother, Linda LeBaugh. "He's at the point where he kind of knows that if everybody stands around that we're going to do something to him."
Like other babies his age, he'll break a smile, give a wide-eyed look at new things and vocalize. His family tries to be near him as much as possible.
"I just want him to know that he's got family here that loves him," his grandmother said.
After eight surgeries and at least three near-death experiences for Ryder, Mandy LeBaugh has seen so many close calls that it's a relief to see days when no complications occur.
"Just to know that he's alive every day, that works for me," she said.
Early in his life, Ryder could not keep any of his food down, so surgery was performed to prevent food from coming back up.
But that means he now gets uncomfortable when he needs to burp. Mom, Grandma or one of the nurses relieves that discomfort using a large plastic syringe connected to a tube to his stomach. They remove a syringe full of food from Ryder's stomach and get rid of the air that would normally make a burp. His dietary needs make it important that all of that food goes back into his stomach once the air has been removed from the syringe.
"Now he's putting on the weight, and he's putting it on too fast," his grandmother said.
His mother faces each new hurdle as it arrives. She hopes care-provider rules will allow her to keep her certified nursing assistant license, allowing her an income for eight hours a day of total care she will provide for her son.
"Mandy will be responsible for the rest of the dialysis care at home, and it's a full-time job," said pediatric nurse Julia Jurgensen, Ryder's nurse. She'll also take care of his feeding tube and give him food by mouth so he will eventually be able to eat that way. He can have applesauce and oatmeal now, but care must be taken with fruits and vegetables because of the potassium they contain, which can throw his blood levels off.
Before Mandy LeBaugh takes over all of Ryder's care, of course, he must first get well enough to go home.
"I think we've had like four discharge dates already. But each time he gets really sick, so we're going to try not telling him this time," his mother says with a smile.
Ryder still needs a kidney transplant so he can discontinue nearly constant dialysis treatments. His mother hopes to find a living donor, and Ryder's body needs that donor to be an adult. His mother and grandmother have been ruled out as matches. But it's still uncertain if anyone matches closely enough.
"It kind of scares you what they go through. There's a lot more kids out there than you really expect," said Linda LeBaugh, who said she knows three people in need of a kidney, including her grandson. Ryder must reach 22 pounds before he can have a transplant, and he's not quite there yet.
"After he gets his transplant, he should be just like anybody else," his mother said.
The family takes Ryder to the Mayo Eugenio Litta Children's Hospital window at Mayo Clinic's Saint Marys Hospital "and he looks and looks." He was even able to go outside for the first time in his life recently, for just a short time.
His family hopes to take him home soon, although it will be tough to leave the staff that they've become close to.
"Considering everything we've been through, I'd say he's done pretty good," Mandy LeBaugh says.
"Outside of all the surgeries, he's just been a normal baby. He's just been a bouncer, a fighter through all of it," said his grandma.
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Information from: Rochester Post-Bulletin
(Copyright 2010 by The Associated Press. All Rights Reserved.)
