AMY HEGGEN, Contributing Writer
PLATTSBURGH — Jonathan Waldron awakes every morning surrounded by machines, with a view of the nurse’s station across the hall.
In the Intensive Care Unit at Boston Children’s Hospital since May 30, he awaits news of a possible lung transplant.
“He’s very close to the top of the list, and we have had offers that unfortunately haven’t been good enough,” said Jonathan’s mother, Marlene Waldron.
Pediatric patients often can’t accept adult organs, especially lungs, she said.
“It’s the hardest organ to transplant; it’s the only organ that interacts with the outside world,” she explained.
HELP BREAT HING
Jonathan, 17, has cystic fibrosis, a life-threatening, chronic disease that affects the lungs and digestive system.
His body is rejecting the lungs from a 2008 transplant, which means he needs help breathing and ridding his body of carbon dioxide.
To help with the process, the Morrisonville teen was put on a machine known as ECMO, or extracorporeal membrane oxygenation.
“So now the blood is coming out of his body and is being oxygenated, the carbon dioxide is being pulled out mechanically, and the blood is being put back into his body,” Marlene explained.
“Unfortunately, there’s a time limit. Thirty-five days is the average a person is on it.”
He has also had a tracheotomy, which makes talking difficult.
Thursday was day 27 for Jonathan, and the wait is excruciating for him and his family.
But every day is a new hope.
“The good thing is that Jonathan is ambulatory,” his mother said this week. “Every day, they try to get him to sit up and do exercises. He walked yesterday and the day before, and he’ll try to walk today.”
Her son, she said, is a quirky guy with a wicked sense of humor, and a prankster.
“It’s hard to explain without meeting him,” she said.
Jonathan jokes around with his favorite staff at the hospital and plays Xbox with one of the nurses. He also enjoys playing computer games on his laptop, which helps to distract him, Marlene said.
“If you can keep your spirits up, that helps with your healing, too.”
‘NOT GIVING UP’
Jonathan missed part of the school year, so friends from home, and certainly family, are missing him. His two siblings, Kierstynn and Averill, hope to travel to Boston for a visit soon.
“He’s a fighter, and he’s not giving up,” Marlene said.
Jonathan made the choice to keep fighting.
“He’s always had a choice in his care, even when his first transplant came up. It’s his life; it’s his body. He has a say in everything,” Marlene said.
Last year, Jonathan was able to join the cross-country team, but his lungs held him back, which was frustrating for him.
“He’s a 17-year-old boy. He wants to go play football at his school,” Marlene said.
Jonathan has lost privacy and independence during the last few months, which has been the one of the hardest parts of being in the hospital, she said.
“He went from having his own bedroom and being able to close the doors to having the doors and curtains wide open,” Marlene said.
Organ donation is close to Marlene’s heart, and she hopes that people are thinking about it, she said.
“There are kids out there like this who need this kind of help,” Marlene said. “It’s a really hard thought when you’re in the midst of grief to consider it; it’s the last thing you want to think about.”
She said that anyone can be an organ donor, and that only a signature is required.
“As a parent of a recipient … I always send prayers up thanking the donor family from his first transplant,” Marlene said. “We had four great years.”
She’s also appreciative of all the people who have offered their help in the past few months.
“People are great,” she said. “It puts faith back into you.”
Learn how to sign up at http://www.donatelifeny.org.