When Mary Boyd Sylva brought her newborn son, Logan, home from the hospital in 2005, she had no way of knowing it was just the first of many, many times to come.
But 8-year-old Logan Sylva is coming home from the hospital near the end of March.
When Logan was just two weeks old, he had a stroke. The result was a condition called West Syndrome – sometimes referred to as infantile spasms – an uncommon-to-rare epileptic disorder that can occur in infants.
By the age of six months, Logan’s seizures were uncontrollable and came at an incredible rate of 300 per day.
In 2008, when Logan was four years old, Mary put him in the car and they made the 1,200 mile road trip to Detroit’s Children’s Hospital of Michigan, where doctors performed a hemispherectomy on Logan.
In layman terms: doctors removed half of Logan’s brain.
Logan got better. Then he came home from the hospital, where he continued to get better.
It was around that time Mary began to call her son “Mr. Awesome.”
Since that time, Logan might not have kept up with the faster kids, his mother says: “He did what he wanted to do, and he didn’t miss out on a whole lot.”
Believe it or not, having just half a brain is not as bad as some might think. Doctors believe the remaining half of the brain takes over much of the functions formerly performed by the removed half.
Logan did well for a couple of years, and his seizures virtually stopped after the hemispherectomy.
But in March 2012, things took a turn for the worse when Logan developed hydrocephalus, a condition in which fluids inside the brain build up, causing cranial swelling.
In October 2010, doctors had placed a shunt into Logan’s brain to drain the fluids off.
“It worked great,” Mary says. “Until March 2012, anyway.”
That’s when something went terribly wrong, although no one, including his doctors at Cook Children’s Medical Center in Fort Worth, knows exactly what or why.
Since that time, Logan has endured well in excess of 30 surgeries. Shunts have been replaced, and replacement shunts have been replaced. Shunt revisions have been done and external drains installed.
The 8-year-old has had multiple brain infections, also known as meningitis, along the way.
He was unable to finish his second grade year at Blue Haze Elementary School in the White Settlement ISD. He hasn’t been able to even start his third grade year.
Logan spent part of December and much of January in a coma, with a feeding tube and IVs providing his only nourishment.
But sprinkled throughout the past year, there have been a few trips home from the hospital.
“We’ve been home maybe four or five times during the past year,” says Mary. “One time, we didn’t get to stay home 24 hours; another time we spent two nights at home; the longest we’ve been able to stay home was four or five days.”
Each time the mother and son ventured away from Cook to go home, Logan’s shunt malfunctioned.
The last time the Sylvas were home was Sept. 13, 2012.
Mary says she’s been the very unwilling recipient of several of what she refers to as “pine box speeches.”
“The doctors have been at the point where they’ve said they would not do further surgeries – that there was nothing else they could do for Logan,” she said. “Each time, I’ve prayed about it and I’ve just known that God still has a purpose for Logan.”
“Here,” she stressed.
Finally, about three weeks ago, in yet another “last-ditch” effort to save Logan’s life, doctors performed surgery and put in a hypoallergenic shunt made of a different type of material than the others.
“He may have had a reaction to the type of plastic used to make the other shunts, although no one knows for sure,” Mary said. “I think the more surgeries we did, the more sensitive he became, until he showed all the markers of allergy and/or autoimmune disease.”
And now, Logan and Mary are making plans for yet another trip home from the hospital.
“Logan is talking again, and can actually have conversations. He can walk with help a distance of 15 or 20 feet,” Mary said of her son. “Everything is getting better – he’s awake during the daytime now and his vision is coming back.”
Pressure from the swelling in Logan’s brain had caused him to go almost totally blind, Mary explained.
But Logan’s is a fighting spirit that won’t stay down, his mom says.
“He’s very determined, and he’s very independent,” she said.
She gave just a taste of that determined independence in a quick story.
When it came time for the Sylvas to order a wheelchair in preparation for going home, Mary asked Logan what color he wanted.
“None,” was his emphatic answer.
Mary explained to him that he might only need the wheelchair temporarily, and pressed him about the color so they could make their order.
“I’ll walk,” he told her.
But it’s his compassion for others that most amazes his mother.
“Yesterday, one of the therapists was here stretching his foot, and it really hurts when they have to do that. Logan was growling at her because it hurt so badly,” Mary said. “When she finished, he had tears in his eyes and he patted her on the arm and told her how sorry he was for growling at her. He told her he didn’t mean to hurt her feelings.”
Logan may be her son, but Mary recognizes his gifts easily.
“He has a tenacity, a will to live, and a compassion for people that I’ve never seen in anyone,” Mary says of her son. “He loves to play with other children – he just wants to be a kid again, go to the zoo, and not have to worry about another surgery.”
As for herself, Mary says some time at home is all she needs. She has spent one single night away from Logan in the past year, sleeping and working in his room at Cook’s.
“I’m so ready to shut that front door and go to sleep in my own bed,” she said. “I’d like to get up in the morning and make coffee. For that matter, I’d like to cook a meal – I haven’t done that in a year now.”
Friends and family are working feverishly to make revisions to the modest home Logan and his mom share near Lakeside. Donations are needed to help with at least $10,000 of improvements that have to be made immediately.
The garage of the home is being converted to a space devoted entirely to Logan, Mary said.
“We’re putting in ramps, a therapy room, and a wheelchair-accessible shower for Logan,” she said. “God knows what’s going on and what’s going to happen, but we don’t, so we have to plan based on what we do know.”
While Mary hopes the changes on the home front are only needed temporarily.
In fact, she was sitting in her car in the parking lot of a car dealership while doing a phone interview for this story.
“I can’t take Logan home in the vehicle I have now – it sits too high,” she explained. “The therapy department at Cook wants to do a vehicle inspection tomorrow, so I’ve got no choice but to trade in for something that sits lower to the ground so Logan can transfer in and out from his wheelchair.”
And the trunk needs to be large enough to hold that wheelchair – something of a rarity in smaller cars.
Donations to help the Sylvas with home modifications for their next trip home from the hospital may be made by going to www.gofundme.com/logansylva, or by contributing to the Logan Sylva Support Fund at any Chase Bank branch.
Logan has his own Facebook page, as well, for those who’d like to keep up with his journey.