Adam Swaney likes girls, drawing, spending time with friends, independence, listening to music, watching DVDs and being the center of attention. A pretty typical 20-year-old, right?
Except that Adam has Duchenne, a severe form of muscular dystrophy that affects young males. It is an inherited disorder characterized by rapidly progressive muscle weakness that starts in the legs and pelvis and later affects the whole body.
Sedgwick County’s Community Developmental Disability Organization contacted Creative Community Living last fall about the possibility of community supports being available for Adam in one of CCL’s settings. In addition to a lot of other equipment, Adam depends on a ventilator to breathe.
He was living with his parents, Leslie and Royce Swaney, and brothers in Haysville at the time.
“Once that question was asked, we worked with his case manager in Sedgwick County and had a group of support staff go visit with Adam, his case manager and his family in his home,” said Sarah Emrick, CCL’s deputy executive director. “Ethel Gates, our director of nursing, was instrumental in the assessment process that determined if we would be able to have the supports necessary to serve Adam.
“We had never served anyone who was ventilator dependent,” she said, adding that few community providers have. “Based on Adam’s needs, the only place we considered was the 12th Street residence in Winfield where we have 24-hour nursing. This was a new set of challenges in terms of what staff would need to learn to support Adam, although his medical needs not related to the ventilator are similar to those of other individuals at 12th Street.”
CCL, which seldom backs away from a difficult challenge, decided to invite Adam to become part of the family and began preparations once an agreement was reached. Nurses and other staff members, for instance, were trained to read information shown on the ventilator. Nurses also learned how to hook up the ventilator and maintain it.
Ethel consulted with nurses at Via Christi Regional Medical Center-St. Francis Campus in Wichita about Adam’s nutritional needs, skin integrity issues, and overall health issues and treatments.
Adam moved to Winfield by ambulance provided by the Winfield Emergency Medical Service in early December, and Dr. Alvin Bird became his primary care physician. Rachel Owens, one of the licensed practical nurses at the 12th Street residence, admits being nervous in the beginning.
“It was pretty scary when Adam first came because he was anxious about the move and I had no experience with ventilators,” she said. “Now, three months later, he’s pretty settled in and doesn’t get too anxious about new things.
“Adam requires a lot of time for dressing changes, breathing treatments, moving him from room to room ? just the everyday stuff ? because of all his equipment,” she said.
Adam tells staff members what he needs and sometimes helps them figure out how to maneuver his equipment. For example, when he took his first shower, he gave tips ? based on his past experience ? as they figured out how to accomplish the task without getting his breathing apparatus wet.
A Home Medical of Wichita respiratory therapist, who has been Adam’s therapist for many years, worked with the 12th Street staff and provided hands-on training with the ventilator. She continues to come once a month to check the equipment and evaluate Adam’s status, and Home Medical still provides his ventilator supplies.
Like many people with MD, Adam’s skin had become fragile. Staff members provide frequent repositioning whether he’s in his bed, recliner or wheelchair. His skin condition has improved as a result.
Since Adam has a tracheotomy and a ventilator, no sound comes out of his mouth when he talks. Staff members learned to read his lips to know what he wants.
“Adam seemed to be comfortable immediately with the surroundings and staff,” said Bill Hedden, team leader at 12th Street. “Like in a marriage, we had a honeymoon period when Adam was on his very best behavior. Now he’s starting to show some challenging behaviors. When something doesn’t go his way, for example, he may become upset with the staff. We’re still working on that, but overall, things have really gone better than what I expected.
“Most individuals with Duchenne don’t live past their 20’s,” Bill said. “Adam knows that. Sometimes I think his anger outbursts are caused by that and the depression it causes. He really has a good attitude overall, and I think he’s pretty happy.”
A special talent of Adam’s adds a special joy to his life as well as some notoriety. Sketchpads he brought with him to CCL are filled with pencil drawings featuring many subjects, but there’s a heavy concentration of Elvis in various poses.
Staff members assist Adam so he can draw while his wheelchair is pulled up close to the kitchen table.
“We’re looking for adaptive equipment and funds to buy it so Adam can spend more time drawing,” Bill said. “In a wheelchair, it’s not comfortable for him to reach the paper. With MD, his muscles have deteriorated and he tires more quickly than he used to.”
A representative of Assistive Technology for Kansans has traveled to Winfield from Wichita several times recently to figure out appropriate adaptive computer equipment that would assist Adam with communication, creating artwork and other aspects of his preferred lifestyle.
Adam’s interest in Elvis isn’t limited to sketching him. He has Elvis movies, CDs, pictures ? even a white, Elvis-type, rhinestone-studded jumpsuit. In a large photo taken several years ago, he is wearing the jumpsuit with stylish sunglasses.
His favorite Elvis song, he said, is “If I Could Dream.”
Adam’s family occasionally visits him, and he has become friends with Gene Weiss, another individual who resides at 12th Street.
“I like Gene,” he said, and expressed interest in helping Gene raise money for the Jerry Lewis Labor Day Telethon. (Gene has done that for years and is currently collecting for 2008.)
Recently, Adam was able to accompany other clients and staff to the local movie theater for an outing ? the first time he’d been to a movie for maybe three years.
“It’s a challenge to get all his equipment mobilized so he can go places,” Bill said. “There’s his ventilator, suction machine and kangaroo feeding pack ? all on his wheelchair. Plus we have to take portable oxygen for him. The other individuals at 12th have the feeding pack but not the other items.”
Adam, who graduated from Campus High School’s special education program, has said he would like to visit his old friends in Haysville and Wichita and his family. He also enjoys “meeting new people” and has expressed interest is watching live theater productions.
“Adam may be able to go out a little more when it’s warmer,” said Rachel, the nurse. “He gets a lot of respiratory infections so we have to use our best judgment whether he should go.
“Adam has a good personality,” she said, flashing a smile in his direction. “He’s fun. He likes to tease people, and we have to tease him back sometimes.”
Sarah, CCL’s deputy executive director, believes Adam is enjoying his new living arrangement.
“I think he has some degree of independence that most young people like to have ? away from their family and more on their own,” she said. “I think he’s adjusted fairly well. It’s not been an easy transition for Adam or his family, any more than for any young person who moves away.
“Even with all the challenges Adam has had in the last several years, he still has an opportunity to be supported in a community. He still has a life. It’s another chapter in his life story. Here’s a young man faced with many, many challenges because of having muscular dystrophy. I truly believe Adam’s got a spirit and a will to survive to live his life to the fullest, whatever that may be. It’s that human spirit that makes people go on. He’s taking advantage of the opportunities he has today. As an outsider looking in, it’s got to be difficult.
“We’ve partnered with his home county, with his family, with the state to provide this opportunity for him,” Sarah said. “Without the willingness of the staff at CCL to take on this kind of a challenge ? to think outside the box, look at options and try to develop the supports that are needed ? it wouldn’t have happened.
“This was truly a statewide effort to make something happen for Adam. He is receiving a level of medical support not usually available through community providers.”
