By Adam Armour/The Itawamba County Times
Toys dangle from the blades of the ceiling fan spinning above Eli Kent’s head. The child, now nearly two, shifted slightly in his full-sized hospital bed, his tiny frame practically swallowed in the folds.
His mother, Alisha, kind of laughed and pointed upward at the fan.
“You see our makeshift mobile,” she said. “Well, you can ask him where the monkey is and he’ll look at the monkey. Or, you can tell him to look at the television, and he will. Ask about his mama or his daddy or his sister and he’ll look. He knows everybody.
“Mind-wise, he’s normal,” she continued, brow raising as if in a shrug. “But he will never meet milestones that a normal child his age will.”
It’s been nearly a year since the Kents — Alisha, her husband, Nicky, and children Kylee and Eli — returned home from the seemingly endless string of hospital rooms they occupied during the first months of Eli’s life. Born with a rare disorder called Spinal Muscular Atrophy with Respiratory Distress (SMARD), a neuromuscular condition that causes a weakness of the muscles. In Eli’s case, the severity is great because he’s unable to move his diaphragm to breathe.
Eli can only breathe with the help of a ventilator. It might be that way for the rest of his life.
When the Kents returned home last year, it was to a wave of fanfare. Community support for the family had been strong, and the Kents had no lack of helping hands being offered to them.
But now, all that has settled down and the family has returned to the rhythm and pattern of being at home. It’s been a challenge, the couple said, but things are going well.
“We’re a little more adjusted than we were a year ago,” Alisha Kent said. “In fact, this first year back has gone by really quickly.”
Normalcy for the Kents might be considered unusual by most. The living room of their Fulton home has been transformed into a combination nursery/hospital room — bright, colorful sheets stretched across a hospital bed; children’s toys stacked near the ventilator and pulse box. A nurse sits nearby as Eli watches a movie on a portable DVD player.
“He has to be watched 24 hours a day,” Alisha explained. She indicated the numerous tubes running from Eli’s throat to the ventilator.
“If that tubing pops off — even just slightly — he has no diaphragm movement whatsoever. He cannot breathe at all,” she said. “Literally, in seconds, he crashes.”
“Once, the ventilator just shut down,” Nicky explained. “Just stopped.” He said the couple had to hand pump air into Eli until the back-up ventilator could be hooked up.
“That’s why you don’t lie down, you don’t go to sleep, you don’t take your eyes off him,” Alisha said. “You just never know; you just have to stay on your toes.”
Before they were able to have full-time nurses helping care for Eli, the couple would sleep in shifts. One would watch during the day and sleep at night; the other would watch at night and sleep during the day. It was a stressful situation, especially for Alisha, who said she rarely slept either way.
Simple things are made difficult by Eli’s condition. During the recent bout of storms, the Kents learned getting the child to safety took a lot of time — nearly an hour after unhooking, moving and rehooking all of Eli’s vital equipment.
“We really have to watch storms,” Alisha said, adding that the family prepares to move Eli long in advance of stormy weather. Better to be overeager than regretful.
“There’s just so much you have to do,” she said.
Day to day
Alisha said he’s doing better.
“He’ll try to speak,” she said. “He can’t, really. But, he doesn’t have to say a word; you can tell what he’s thinking by his facial expressions. He talks to you through them. He has a different fussy face for everything.”
Alisha smiled and said she hopes her son will continue to improve through physical therapy and medical advancement. She’s heard from other families that a rescue gene is being developed that might, in a way, cure what ails Eli.
“Maybe, they’re hoping, that this gene will stop the disease process and allow the body time to catch back up … regenerate itself,” she said. “We’re hopeful for that. I wake up every day and say, ‘Today, he’s OK. And I live for each day. I don’t look to the future, except for a cure. Otherwise, I live from day to day, and today he’s perking along.”
As for the rest of the family, they’re “perking along” as well. Soon, they’ll have a nurse with them 24/7, which will allow either Alisha or Nicky to return to work.
It’s a frightening, but inevitable proposition, this life-change.
“It’s scary to think about,” she said, looking across the room to her son. He squirmed slightly in his massive bed, the ventilator calmly thumping in the background.
“It’s scary to know you’re about to walk out that door and leave him in someone else’s care and try to go on about life in somewhat of a normal fashion,” she said.
She turned back, smiled and shrugged. “But, it’s got to be done.”
Adam Armour can be reached by calling 862-3141 or by visiting his blog at itawamba360.com.