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Preparing Camille for surgery.

Upon reaching adolescence, our daughter Camille, who has athetoid/spastic cerebral palsy, developed a curvature of the spine that could only worsen with time. She needed surgery, As one doctor said, "If you have it, you may lose her. But if you don't, she won't live ten years, and those will be bedridden."

The needed procedure was likely to involve 10 hours under the surgeon's knife and a three week hospital stay. Camille would possibly have to miss the remaining three months of the school year. The recovery time would include six months in a plastic body jacket while the spinal fusion took place. Not a fun prospect as we faced the North Carolina summer. Yet, if we waited much longer, straightening her back would be more difficult.

We were frightened. We liked neither the thought of surgery nor the prospect of prolonged absence from school. What particularly frightened us was the thought of our daughter, a non-vocal "quad," entering a large teaching hospital with a nursing shortage. How would she communicate with the many professionals involved in her care? How would she even tell people about her basic needs - something to drink, a change in position, a bathroom call?

Fortunately, Camille's 15 years of life have been characterized by flexibility and adaptability to change. Plans can change and she will usually "go with the flow." But she does need the help of an attendant and she does need to talk things out on her computerized communication board (Prentke-Romich Light Talker).

A combination of a strong constitution and good luck had kept Camille out of the hands of doctors, except for an occasional visit to outpatient clinics. Neither she nor her parents had had much experience with hospitals. We wondered how she would psychologically go from a mobile (wheelchair), "talking" (Light Talker), and competent (middle school student) individual to a bedridden patient.

GETTING READY

The only decision we all could make was to "Go for it!" Camille and ourselves needed to prepare for what was to lie ahead. We included Camille in all of the discussions of what was to take place.

We knew that Camille needed to be able to communicate her needs to the hospital staff. She would be unable to use her communication board lying on her back. This position would also make it impossible for her to use her computer with a HeadMaster (Prentke-Romich) pointing light.

Camille's communication therapist and special education teacher creatively designed a system of icons (symbols) laminated in clear plastic overlays which were displayed on a plexiglass adjustable overhead stand on wheels. Using this apparatus, she could indicate her wishes and needs by eye pointing to the different symbols, on the back of which were words describing the particular icon. One overlay was devoted to food items, another to specific activities of daily living and a third to needs in a hospital environment.

We were not looking for a system which would allow her to communicate complex ideas. Camille had to be able to give specific information to doctors, nurses and attendants quickly and without confusion. This simple piece of equipment would carry her through until she was able to return to her wheelchair. The approach was perfect for the situation, but more importantly, Camille actually participated in preparing for her ordeal, and this gave her confidence in being able to get her needs met.

We knew Camille might not be ready for the potentially frightening environment of the operating room, recovery room and intensive care unit - each packed with electronic monitoring devices with flashing screens and beeping noises - so she was prepared for this. One week prior to admission, we all visited each portion of the hospital where she would spend some time. Camille "talked" at length with her surgeon and anesthesiologist and met nurses on the ward and in the pediatric intensive care unit. Of special help to all of us was a guided tour through pictures of the surgery itself conducted by an orthopedic nurse. Had we not participated in this short course, we would have been totally unprepared for the bloated appearance of our daughter after she finished surgery. Topics of blood replacement, bone grafting, use of stainless steel rods for support, aftercare, etc. were also discussed at this time.

Following this session, Camille practiced using a bed pan and "talking" with the word board. We demonstrated the surgery using a little plastic skeleton. She asked questions about what she had seen and heard. The most important question, it turned out, was "Do they have television in every room?" She wanted to be sure that she didn't miss her favorite program, "Doogie Howser, M.D." while she was in the recovery room the day after surgery ! AFTER SURGERY

Camille's basic good health and spunky nature made each day progress to the point that after one week her physician felt that we could take care of her at home as well as in the hospital. (It helped that daddy was a pediatrician and was up for taking out the remaining stitches and watching the wound for proper healing.)

Another help in our care for her at home was a reclining wheelchair we rented. With it, Camille could continue in the bedrest position but enjoy some changes of scenery. By using a piece of high density foam, we converted an ordinary wheelchair to a bed on wheels. It was easy to use the bedpan, feed her in a more upright position and even go for a ride in our Vanagon to see the spring flowers.

Her plastic body jacket was ready the second week after surgery and as soon as she put it on she returned to school in her wheelchair. Fortunately, there were no problems with wound healing, prolonged pain or emotional difficulties with which to contend. Like all children who have been given a lot of attention in the hospital, there was some "spoiled" behavior to deal with and some regression as well. However, we believe that the preparation which preceded hospitalization benefited the recuperative powers of both her mind and her body. As her teachers, we also prepared ourselves for the ordeal. Though we had worked up a dread of the experience and realized that things could have gone wrong, we felt that much of the key to success was preplanning on the part of everyone.

However, that is not the end of the story. Perhaps, unintended beneficiaries of the preparation were the health professionals and others who were responsible for her care. Medical students, nurses, phlebotomists, doctors and orderlies saw a confident, competent, intelligent and outgoing teenager with a disability. And maybe that will do something to disturb still existing stereotypes of kids with disabilities. If so, the time spent in preparation for hospitalization and surgery will have been even more worthwhile.

Susan and Michael Durfee live in Raleigh, North Carolina, with their children, Camille, 15, Stephen, 22, and Laura, 25. Susan holds a B.S. from Ohio University and is a visual artist and Secretary of the Board of Directors for the North Carolina Association for Augmentative and Alternative Communication. Michael holds an A.B. from Ohio University, M.D. from University of Virginia School of Medicine and M.P.H. from University of North Carolina. He is director of Wake Teen Medical Services in Raleigh and Professor of Pediatrics at University of North Carolina School of Medicine
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Author:Durfee, Susan; Durfee, Michael
Publication:The Exceptional Parent
Date:Jul 1, 1990
Words:1233
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