Published 12:00 am Thursday, December 12, 2013
MOCKSVILLE — There’s great rejoicing in Mocksville. Superboy has finally come home.
Landen Spry, the 16-month-old son of Stacy and Jolene Spry, arrived at the family farm just before Thanksgiving. It felt so good to sleep in his crib.
Landen was born with VACTERL, a condition that carries with it multiple, seemingly unrelated health challenges. He and his mom and dad spent 10 months at Boston Children’s Hospital. While there, Landen underwent some 16 surgeries — at least that’s what Jolene believes. Truth be told, she lost count. Early in his young life, he underwent surgery to repair a hole in his heart. But the most complicated surgery was an 18-hour event this fall, during which surgeons created a new esophagus for Landen by using parts of his small intestine.
But now the family of three is back home on their 25-acre property, which brings with it plenty of fresh air, sunshine, contented cows, two friendly dogs and one slightly temperamental donkey — everything a little boy needs to grow healthy and strong.
Landen’s far from feeling 100 percent, though. For the next two months, he’ll be coming off the sedation drugs that were given to him in the hospital. He spent so long on the intensive care floor that he earned a title, “The Mayor of Seven South.” Each morning, Jolene would put Landen in his stroller to make rounds among hospital personnel and patients.
These days, Landen likes to watch his favorite show, “Bubble Guppies,” and get plenty of snuggle time with his daddy and his granddaddy, Mike Spry.
Mike says that 800 miles is a long way to live from his grandson. He much prefers his being just down the road. When talking with Stacy about Landen’s health, Mike sounds more like a physician than a heavy equipment operator.
“It’s been an unbelievable journey,” Mike says. “It’s been a labor of love.”
“God put Landen with Stacy and Jolene for a reason,” says Dr. Jessica Blumenthal, his obstetrician. “Though it’s been a hard journey, God has seen them through it all.”
She adds, “It really is a miracle that he is where he is. He was the youngest patient to undergo the esophagus surgery, and we’re very close to being done with surgeries.”
After months of living in a hospitality home near the hospital, Stacy and Jolene are trying to settle into the routine of being home. On a recent trip to Walmart, they were totally disoriented, because they hadn’t bought groceries in months. On a recent Saturday, they planned to travel to Concord Mills, to have Landen’s picture made with Santa at Bass Pro Shops.
Just normal stuff.
Although they’re happy to be home, Stacy and Jolene left many friends behind on the hospital staff. Landen’s nurses still call and text to check on him. Jolene, who works as a nurse for Blumenthal at Carolinas Women’s Health, felt as if she were going to work every morning. She and Stacy took Landen’s blood pressure and his heart rate. Fortunately, Landen was healthy enough to leave the floor and go out to the garden every so often. Not all patients on the floor were.
“We saw a lot of stuff we shouldn’t see as parents,” Stacy says. “What he has is manageable. We feel very blessed. The support that the community has given us has taken the financial burden away.”
Stacy and Jolene both work, and Stacy has insurance for Landen. So the money raised went toward transportation for the family, meals and lodging. The host home was only $30 a day, Stacy says, but that amount added up over the long weeks and months.
“Without the fundraisers, there would have been a financial burden,” he says. “We’re very lucky. Otherwise, we would have come home with a credit card debt hanging over our heads for years.”
At home, Stacy has an office in the basement, where he works in aircraft engine sales. At the hospital, he worked in the room’s sleeping area. He travels a lot, but was able to arrange his schedule around Landen’s major surgeries.
Jolene is working for the women’s clinic PRN — as needed — which has turned out to be every day since two nurses are out following surgeries.
“That office did a lot for us,” Jolene says, so she’s glad to help out. When Jolene is at work, Mike comes and stays with Landen while the home health nurse is there. That makes it a little easier for Jolene to leave.
Even though Landen is home now, Stacy and Jolene naturally worry about his health. Is the fever he has caused by teething or something else? Will the esophagus continue to function?
“We’re not out of the woods with the esophagus,” Stacy says. “We like to think we are. But it keeps you on edge.”
Landen will have to learn to reuse his arms and legs after months in the hospital. He’ll have to learn how to eat, swallow, suck — things we all take for granted and don’t even think about, his dad says.
He’ll return to Boston sometime in the spring for another surgery — this one to create an anus. One of the hallmarks of VACTERL is that babies are born without them. After that surgery, he’ll have a final surgery a couple of months later to get rid of his colostomy bag.
After that, Jolene says, “We hope he’s pretty much done with surgery.”
It was amazing for the Sprys to see children who came to the hospital to receive transplants. They received surgery and went home long before Landen did. They joke that they received medical fellowship training from Harvard, the university associated with the hospital. They’re extremely thankful for family and community support, and for the support from their employers.
“We’re just happy to be sleeping in our own bed,” Jolene says. “We don’t hear sirens anymore.”
Still, she says, the whole experience “warped” her — her own description. “I don’t know if I’ll ever get over it.”
Besides enduring all of Landen’s surgeries, Stacy and Jolene were in Boston during a huge blizzard and during the Boston Marathon bombing. But they were also there to see the Red Sox win the World Series.
“We’re Red Sox fans now,” Jolene says.
The good thing is that Landen won’t remember any of it. Years from now, he’ll just remember how great it was to grow up out on the farm, and how much his mommy and daddy love him.
Freelance writer Susan Shinn lives in Salisbury.