For more than two years, Tobey Miller hasn’t been able to read her baby bedtime stories and kiss him good night.
The only home he has ever known has been a room at Cardinal Glennon Children’s Medical Center, more than two hours away from her.
A rare kidney disease — autosomal recessive polycystic kidney disease — had left Kyle McCarty, 3, attached to tubes and needing constant medical care. But two months ago, Kyle got his long-awaited kidney transplant. Later this week, he is finally expected to begin his journey home.
Miller, 32, of Jefferson City, can’t wait to show her son the world — water fountains, animals, playgrounds.
“He hasn’t seen so much,” she said. “I can’t wait to see his little eyes light up and see the excitement on his face.”
She’ll be grateful to look into his blue eyes, hear him laugh and hug him whenever she wants. That’s been the hardest, she said, stroking his hair.
“Just not being able to hold him,” she said, tears streaming down her face. “When you’re a mom, you want to be around your kids all the time. You want to hold him all the time.”
What’s brought comfort, Miller said, is knowing the hospital staff treated Kyle like their own. Nurses rocked him to sleep at night, played cars with him on his play mat. Doctors wheeled him around with them on their rounds. Other patients, medical residents, cleaning staff — even if they’ve moved to other floors — are always stopping by his open door.
Kyle is sweet and outgoing despite being sick and stuck in a room, said his kidney specialist, Dr. Ellen Wood. “He’s one of those little children who pulls on your heartstrings.”
His mom has taken a small, red photo album and written on the front, “The reason I love Cardinal Glennon so much.” She is filling it with pictures she’s taken of Kyle and his various caretakers over the months. She plans to leave it as a gift before he leaves.
“In a way, I feel sad,” Miller said. “I feel like I’m taking him away from his family.”
BACK TO HOSPITAL
When Kyle was born, his kidneys, liver and spleen were much too big for his body, making it impossible to breathe on his own. His disease, sometimes called “infantile PKD,” is a genetic disease affecting one in 10,000 to 40,000 babies.
Kyle was transferred from Columbia Regional Hospital to Cardinal Glennon, where doctors removed his kidneys one at a time, gradually switching their function to a catheter inserted into his abdomen. The catheter allowed him to go home when he was 7 months old.
The catheter, however, got infected just after his first birthday, so he had to come back to St. Louis for treatment. Doctors inserted a new one, but the infection returned. They had to switch using a catheter through a major vein in his neck. But in the course of two weeks, he ripped out three of them, his doctor said. With just one more vein to use, they chose to admit him until he got a transplant.
“He needed to be in the hospital with medical personnel constantly watching him,” Wood said, “He would die because he would have no access for dialysis if he did it again.”
His liver and stomach were also not working properly. Machines, tubes and bags did the work of feeding him and draining his stomach.
Miller tried to visit three times a week but at times made it only once. She squeezed in trips between work at a flower shop, classes at Lincoln University and taking care of her 5-year-old, Zachary McCarty. She also shares custody of three other boys from a previous marriage. Kyle’s father, Brian McCarty, also has been sure to see Kyle at least once a week.
During her visits, Miller caught up on the routine things she missed. She gave him baths, covered him in lotion and brushed his hair. She read books and watched his favorite Sesame Street videos. If he was well, she rolled him outside in a stroller to see flowers. She got in lots of snuggles. “I like to hold him in the rocking chair and let him fall asleep,” she said.
Pillows and blankets from her home fill his crib. Elmo toys sit in the corners. For Kyle’s second and third birthdays, she brought cake for the staff and opened presents in a meeting room. “That’s about as close as it can come to home,” she said.
MAKING PROGRESS
Kyle had to grow more before getting a transplant, because adult-size kidneys do better. He also had to wait for a good match and be healthy enough for the surgery. That finally came April 25.
Since his transplant, he’s already made strides in his development. Kyle is not walking yet, but with more energy and comfort, he’s pulling himself to his feet and saying more words.
Doctors expect him to be released this week, first staying at the Ronald McDonald House in the Central West End. Traveling families of patients can stay at no cost. He will stay there a few weeks, so he can easily get to checkups.
Once he’s home, he’ll continue physical and speech therapy. He’ll need to be fed through a tube in his stomach until he gets used to eating solid food.
Then, Miller says, she will finally feel like her family is complete. It hasn’t felt right when all her boys are together, because her baby was missing. She’ll finally take the family portrait she’s been putting off.
The hospital staff has a farewell party for Kyle in the works. They will miss hearing his boisterous babbling from the halls, chatting with him when he accidentally pushes the call button and watching him grow. “We got so close to him,” said nurse Christine Thurau. “It’s hard not to.”
Miller is making a photo book for Kyle just like the one she’s leaving as a gift for the staff. She plans to take it home, flip through the numerous faces and ask Kyle, “Who’s this? Who’s this?”
It’s important to her, she said, that Kyle doesn’t forget his first home.
Copyright 2009 St. Louis Post-Dispatch