FREDERICKTOWN — No one really likes to wait, but life is full of waiting.
Twelve-year-old Avery Silliman of Fredericktown is waiting for a kidney, and all of the life changes and good health that kidney will hopefully bring.
“I can’t wait to get one,” the seventh-grader said. “It’s taking forever.”
On the transplant list since April, Avery will need a donor kidney from someone with the same blood type and tissue type. Last summer, Avery’s grandparents, Larry and Lee Keyes, noticed he was extremely lethargic and swollen during a trip to a fast food restaurant. He was seen in the emergency department at Knox Community Hospital, where he was found to be extremely anemic and in renal failure.
Avery was immediately transported to Children’s Hospital in Columbus for emergency dialysis. The Keyeses said their lives, and Avery’s, were completely changed by the news that Avery’s kidneys had never grown properly, and he was now in end stage renal failure. He would need to begin dialysis three times a week at Children’s, as dialysis for children is not available anywhere closer to Knox County than Columbus.
Avery has lived with his grandparents since October, and their life now centers around their grandson and the extensive care he requires.
“It’s more than a full-time job, it’s a nursing job, too,” Lee said.
She gives her grandson several different medications each day, and injections weekly. Long trips to Columbus for dialysis three times each week took a toll on all members of the family this past winter.
“It didn’t matter how sick he was, or what the weather was, he had to get there for his dialysis,” Larry said.
Because Avery’s life depended on the regular treatments, his grandparents were trained to perform the dialysis at home, using a special machine that filters waste products from his body through an abdominal catheter using osmosis. The process begins each night before bedtime; the entire process takes over 10 hours each night, while Avery sleeps.
Avery said the catheter is sometimes painful, and he is not a big fan of needles, which have become a part of his routine medical testing and treatment.
Every morning and evening his blood pressure and weight must be checked. A large notebook filled with careful documentation is added to throughout the day. The Keyeses must carefully track everything Avery eats and drinks, and his diet is extremely restricted.
A dairy lover, Avery is restricted to only a cup of milk a day. He cannot consume normal amounts of sodium, calcium or phosphorus because his kidneys can’t remove these compounds from his body. The list of what he cannot have is exhaustive.
“The stuff he can’t have is what he craves,” Larry said.
Since beginning home dialysis, Avery has returned to school full time. Each week, his grandmother coordinates his lunches with the school staff so that his diet is monitored.
“They’ve been really wonderful to help me with what he should have,” Lee said.
The Keyeses are both 70 now, and taking care of a young boy with serious health problems was not what they had planned for their retirement.
“It’s definitely changed his life, and it’s changed our life,” Larry said.
Monthly trips to Children’s for blood work and doctor’s appointment have become part of their regular routine. When Avery had appendicitis in January and needed emergency surgery, his grandmother stayed with him in the hospital. Their garage is now filled with dozens of large boxes of dialysis supplies.
But the hardest part is waiting.
“It’s like waiting for someone to show up and they don’t show up,” Larry said. “The waiting is hard.”
In the meantime, the Keyeses are ensuring Avery has as normal a life as possible.
“He is such a good-hearted kid,” Larry said. “He likes people, and has never had problems making friends.”
Avery said he enjoys math and art classes the most in school. He also likes to draw, and play video games. His grandparents have a new basketball hoop in their driveway, and Avery is quite a shot. He also enjoys riding his bike.
“He tires really easily, of course,” his grandfather said.
However, the home dialysis which is gentler to his system, has improved his stamina somewhat.
This summer Avery is looking forward to going to camp with other kidney patients. He is also looking forward to the Knox County Fair. The faster the ride, the better, according to Avery, who said he would like to be a race car driver when he is older.
Both the Keyeses carry cell phones so that when the long-awaited call comes through that a kidney is available, they will be able to drop everything and rush Avery to Columbus for the transplant. While the wait could take several more months, or even years, they have everything ready to take to the hospital — just in case.
“He’s really been through a lot,” Larry said of his grandson. “And he’s handled it all like a real trooper.”
Avery said that after he has his new kidney there will be many things he can do that he can’t now. He looks forward to sleepovers with friends, swimming at Sockman Lake and having the energy to play basketball for as long as he wants.
