Kevin Burns

Tami Burns can’t believe it’s already August. “Several months of our life just stopped,” she says, referring to the experience that brought her family to SSM Rehabilitation Hospital.

On a Monday in January, 20-year-old Kevin Burns mentioned to his parents, Tami and Bill Burns, that his feet felt numb. The next day, he had numbness in his hands. By Wednesday, Kevin couldn’t even hold a pencil.

He went to see his doctor, where he passed out and was taken to the emergency room. After nine hours and a battery of tests, Kevin was admitted to the hospital. The situation got worse. By Sunday, he was on total life support, diagnosed with Guillain Barre syndrome, a rare disorder in which the body’s immune system attacks part of the peripheral nervous system.

Virtually paralyzed and unable communicate, swallow or even breathe on his own, Kevin spent the next month in the Intensive Care Unit at SSM St. Mary’s Health Center.

“The only thing he could do was blink his eyes,” said Tami, who spent every night and day in Kevin’s ICU room, where she and Bill slept in recliner chairs. Kevin’s grandmother and girlfriend visited every day.

After two weeks in the ICU with little progress, doctors told Tami and Bill they didn’t know how long Kevin would remain in his present state, and prepared them for the possibility of having to take Kevin home on a ventilator.

But then, little by little, Kevin began to show signs of improvement. First, he moved his finger a little, then two fingers, and eventually his whole wrist. For one hour at a time, he was able to be taken off the ventilator.

While he was still in the ICU, therapists came to Kevin’s room to show Tami, Bill, Kevin’s grandmother and his girlfriend how to move his feet and arms to help maintain some movement.

“We did it every hour to help keep him mobile,” said Tami.

After a long road in the ICU, Kevin was improving enough to be considered for transfer to SSM Rehabilitation Hospital at St. Mary’s.

“At that point, it was very devastating, as parents, to see what your child could not do,” said Tami about the initial evaluation with SSM Rehabilitation Hospital.

“I was completely paralyzed,” Kevin remembers about his first days in rehabilitation. “The only thing I was thinking was whether I would ever walk again.”

“When he first came here, he couldn’t move anything,” said Rachel Smith, Kevin’s occupational therapist. “He couldn’t reach his hand to his face. He couldn’t do any self care or feed himself,” said Rachel.

“Kevin’s attitude was absolutely fabulous for a 20-year-old,” said Tami. “But what really made him get better in rehabilitation was, on that first day, seeing all the other people who were worse than he was, and knowing that at least his road would come to an end.” That road included a lot of therapy.

“We worked on dressing, sitting balance and self care,” said Rachel. “We worked on strengthening his arms and coordination.”

“Every day was a crying—a good cry—to see all the accomplishments he was making in rehabilitation,” said Tami. “Learning to hold the toothbrush and comb his hair was quite an accomplishment.” He also worked on standing in the harness, then on his own, and finally walking.

“I remember the first day he started walking,” said Rachel. “His mom started crying, she was so excited. His family was so supportive,” she added.

“He seemed to progress faster than most Guillain Barre patients,” said Rachel. “Day-by-day he got better.”

“For how unlucky he was to get this, he was lucky to recover so quickly,” said Tami. Guillain Barre afflicts only about one person in 100,000. Most patients recover from it, although recovery can take as little as a few weeks or as long as a few years, and some individuals still experience residual weakness years later.

“I think starting rehabilitation so early had a lot to do with the quick recovery,” said Tami. She also gives a lot of praise to all the doctors, nurses and therapists who treated Kevin, as well as his family and friend supports. “His dad was his backbone through this whole thing,” she said.

When asked what helped most in his recovery, Kevin said, “Honestly, how nice everyone was. That was 100 percent of it. They [the doctors, nurses and therapists] will always have a place in my heart.”

Kevin was discharged from inpatient rehabilitation in March without any assistive devices and came back for only four visits of outpatient therapy. He now considers himself about 99 percent back to health. He’s back to riding his bike and walking, but still can’t run too well. He admits he doesn’t have the strength and endurance he used to, but hopefully that, too, that will come with time.

August 2005