RACINE – Success is measured in small pieces in the Renguette household. Carly can move her left hand now, her right hand a bit, her legs a bit, she can stand by herself with help, and she can talk again.
It’s not much for an active 11-year-old, yet it’s much more than she was capable of just a couple of months ago. It began innocently enough on the morning of Sunday, Aug. 20.
“I came up from the basement, where my cousin and I were sleeping, and had a neck ache,” Carly said last week. She said it slowly, each word a chore. She was seated in her wheelchair which she controls mainly by tilting her head.
It was between 8 and 8:30 a.m. when she awoke that morning. “What we thought was happening was she had a kink in her neck,” said her father Don. A couple of Advil, an ice pack on her neck, and her parents thought the problem would go away.
There was no reason to suspect anything else. Of Don and Sheri Renguette’s three children, Carly was the healthiest, he said, and had just completed a summer soccer camp.
“And then it got so bad I couldn’t talk,” said Carly. They called for paramedics.
St. Mary’s Medical Center is just minutes from the family home, but the doctors there could find no answers. Carly’s awareness came and went. She recalls the helipad on the hospital roof.
By the next day, Carly was stable at Childrens Hospital of Wisconsin but no more than that. In the first week she fought off pneumonia. There was test upon test – CT scans, MRIs, blood tests, an ultrasound of her heart.
“Every single test that they did came back negative,” Don said. “We got very close with a lot of the doctors at Childrens Hospital, and they were very frustrated.”
The best hypothesis the doctors could come up with is that while she was on a carnival ride at a church festival on the previous day (not the first ride she’d been on), her neck was twisted oddly, some blood vessels were damaged, a clot formed, and that caused a stroke, cutting off the oxygen supply to the part of the spinal cord in her neck.
The doctor
“Well, most of our spinal cord injuries are due to Motor vehicle collisions or intentional crimes such as gunshots and assaults,” said Dr. Merle Orr, a spinal injury specialist at nearby Froedtert Hospital where Carly was transferred from Childrens. Certainly one wouldn’t expect this result from the forces generated on a carnival ride, he said. “I think it’s just a really weird thing that’s happened to her, and all that we’re left to do is kind of guess what happened because nobody really knows.”
There’s a paucity of published studies on spinal strokes because there are so few patients. One estimate is that spinal strokes comprise just over a percent of all strokes.
Much about strokes is known – the chemical cascades which trigger secondary cell death after the lack of oxygen kills initially affected cells, and there are scientific papers talking about treatment options. “And seeing as how Carly’s case is so rare,” said Orr, “you throw all the conventional wisdom out the door because other than the fact that it’s incomplete, you don’t know exactly what caused the injury.”
Incomplete means that Carly never lost all nerve function; even when she couldn’t move, she could still feel the needle pricks as yet another blood sample was taken. That’s a good sign. Generally, said Orr, the more function you start with following an injury, the more returns as you recover.
For the moment, Orr said, her treatment is electric stimulation of muscles and conventional physical and Occupational Therapy. Age is in her favor, too, not biologically, because the Central Nervous System is generally set once it’s formed, he said, but because she is young and hopeful and resilient.
“All too often I think people feel spinal cord injury is almost a death sentence. If anything I want to warn against assuming that posture,” said Orr. “I want it to be known that Carly has a bright future, and I’m encouraged by things that I’ve seen since she’s been discharged from the hospital.”
The long road
Still, Carly’s recovery is likely to require years.
She came home on the Tuesday before Thanksgiving, but she must still be driven to Froedtert three times a week for therapy. On days when she stays home she continues her recovery in using equipment in what used to be the dining room.
“Her trunk is getting stronger. She’s able to sit up,” Sheri said. “Her legs are getting stronger.” She has a machine to help her stand.
“I don’t like that thing,” Carly said quietly. It leaves her short of breath. Her lung capacity is only 35 percent.
Even though it’s not the best situation, the Renguettes count their blessings: that the stroke happened during the day while Don and Sheri were home, and not while Carly slept; the generosity of people who helped keep up their house; the friends who helped remodel the family’s ranch house to accommodate Carly’s return; the employers, SC Johnson for Don and Johnson Financial for Sheri, who didn’t balk at the parents’ need for time.
“We have just been so fortunate,” Sheri said.
Carly is still frustrated, when her hand spasms and there’s no one nearby to straighten it. While she and her parents recited their ordeal, Sheri rose from a sofa several times to see to the hand, gently uncurling the fingers, turning the hand palm down and pressing the fingers into the white fleece wrapped on the wheelchair arm.
It’s frustrating, Carly said, “but the rest, I know it’s going to be a slow process, but I know I’m going to come back because I pray to God every night to come back.”
By David Steinkraus
Journal Times
