Trail’s Edge Camp for Ventilator-Dependent Children

photoSummer camp has become a rich tradition. It stirs up fond memories of childhood—singing songs by a campfire, making s’mores, and going to breakfast early in the morning while the grass is still damp with dew. If you have been to camp, surely you remember a great ghost story, a camp counselor you had a secret crush on, or perhaps a prank your cabin pulled on the cabin next door. It is a time for sleeping in cabins, fishing, hiking, boating, and horseback riding. It is a week without parents and siblings, a time to test your independence, and make new friends.

Summer camps are as much a part of our country as baseball and apple pie. There are now camps that specialize in areas such as sports, religion, and high adventure. In the early 1960s we began to see the benefit in camps for kids with special medical needs. These camps have been very successful in offering the typical camp experience as well as improving children’s attitudes toward their disease. Camps addressing the needs of children with cystic fibrosis, diabetes, and asthma would be started years before the practice of sending neonatal and pediatric patients home on ventilator support.

Planting The Seed
At the University of Michigan, Mott Children’s Hospital, Ann Arbor, we discharged our first set of pediatric patients home on ventilator support in 1981. As the number of children requiring mechanical home ventilation increased, we became aware of the social and economic ramifications for their families and the concerns for children’s developmental needs. Our attempts to address these concerns resulted in establishing a support group. This group was multifactorial and included meetings with families as well as hospital staff to provide an opportunity for parents to network with each other, vent their frustrations, and brainstorm specific problems. The demands and stresses on the family of a ventilated child became evident to those of us on the medical staff. Many of these frustrations were centered on needing a nurse to provide care with the added frustration of lacking privacy in their home when a nurse was there. Many parents openly described the deterioration of their marriage because communication and intimacy were so strained by the presence of a nurse staffing in the bedroom next to theirs. At one of these meetings held in the summer of 1989 came a poignant plea from a parent asking for a break—just a few days when her son would be cared for outside the home and she and her husband would have freedom from the responsibilities of caring for him. A few days to rest, regroup, and revitalize their marriage. Her plea struck a chord. I remembered planning my own children’s week of summer camp and the break I enjoyed. Why couldn’t we provide a week of summer camp for ventilator-dependent kids as well? Remembering that particular mother’s words would provide the inspiration and the commitment needed to start the first camp for ventilator-dependent children without their parents or primary care givers.

photoEstablishing A Camp
To begin the process, four questions needed to be answered to determine if a camp such as this was possible.

1. Is there an appropriate site? The grounds were required to be barrier-free (even for power wheelchairs), have sufficient electrical outlets, and be within 200 miles of the medical center. A perfect site was found 100 miles away—the Fowler Center, which offers year-round camping for children and adults with various disabilities and remains the home of Trail’s Edge Camp.

2. Can we obtain funding? How much would the project cost and where would we get funding? We did not actually receive funding until several months before the camp began. With the support of the medical center, we believed that through grant writing and individual fund-raising efforts, we could raise the necessary capital.

3. What would state licensing requirements be for a camp license for children with these types of disabilities? While investigating, we found that our own standards for staffing and safety far exceeded those of the state.

4. Obtaining liability insurance for volunteers, medical coverage, and coverage for professional licenses. Campers also needed to be covered for injury and illness. After a meeting with the medical center attorneys, blanket coverage under the center’s policy was obtained.

photoWith these items addressed, we established a core group of seven volunteers. Regular meetings began in the fall of 1989. The initial step centered on the recruitment of volunteers. We sought out medical professionals who were ambitious, and committed, and had experience with both summer camps and physically challenged children. From these volunteers, an official organization designed to oversee all aspects of the camp program was established. This proved to be an important initial step since the organization coordinated the various activities and allowed qualification for funding as a nonprofit charitable organization. Consultation with volunteers from cystic fibrosis and muscular dystrophy camps produced the following list of needs that would have to be met prior to opening the camp:

• establishing goals, bylaws, and a board of directors;

• learning the philosophy and management strategy of a summer camp;

• planning and procuring the needed medical supplies and activity supplies for the week of camp. Medical supplies would need to include extra supplies for all of the campers’ needs as well as basic first aid supplies. Activity supplies would include those needed for outdoor and indoor activities and for campers with varying degrees of physical capabilities. They would also have to include hands-free technology for campers with high-level spinal cord injuries;

• recruiting volunteers and campers.

That year was packed with endless planning, soliciting supplies, seeking funds, and recruiting volunteers. Due to the medical complexity of the soon-to-be campers, volunteers with strong medical backgrounds were targeted.

Throughout the entire process, the parent support group was kept abreast of the various planning stages of camp. It was key that parents were confident about the volunteer’s ability to care for their child’s specific medical needs. Apprehension was eased by a home visit prior to camp by the volunteer who would act as the child’s partner. This provided an opportunity for the family, camper, and partner to go over a specific care plan. Orienting care in a home setting may be quite different from the way it is conducted in a hospital setting. An important goal was to make the most of the camp experience, not to bring the hospital environment to camp.

photoThe First year of Camp
After 8 months of careful planning, the first Trail’s Edge Camp took place. After 5 long days and nights, 18 campers and 48 volunteers discovered something magical. It was not an easy task. In fact, it was the most physically and emotionally demanding undertaking any of us had ever experienced. The success of the program was difficult to measure, yet all of us knew our lives had changed forever. The campers had achieved a sense of independence that they never knew existed. As for the volunteers, we gained knowledge of the spirit that comes with being a child. The resilience of childhood—when achievement and adventure are synonymous—became contagious. Even the oldest volunteers found themselves reverting to their youth. We still tell “prank tales” from the first year. When it was over, the parents arrived early. Their faces held anxious looks that quickly changed as stories were told with excitement. Hearing about campfires, late night pajama parties, and other “normal” camp experiences replaced anxiety with relief and hope for future years. The volunteers already knew what they would be doing in the first week of June the following year. In future years, parents would plan vacations, schedule house renovations, or just enjoy the “break” that one exhausted mother first requested in 1989.

As for the campers, most have returned year after year. Every camper has achieved some degree of independence—the independence we sought to give that first year. Physically and emotionally, our campers have grown. Like proud aunts and uncles, we like to feel that we had an influence on their success. We sometimes forget to tell them how important they have been in our lives and how much they have contributed to our success.

Next summer will be the 12th year of Trail’s Edge Camp. Over the past years we have increased the number of campers we accept to 30. Hundreds of volunteers have participated in our camp and may either return year after year or come only for 1 week. But I guarantee that all the volunteers that have participated leave changed. They are or will be better health care providers, better citizens, and perhaps better people.

I was able to start Trail’s Edge Camp with the support of my boss, Ken Bandy. His support and the support of all the RTs in our department continue to make it a reality. This seems to be very fitting because never has a group of children become so dependent on a profession such as ours. RTs who work in pediatrics see infants and children during the worst times of their lives. We have agonized over weaning a premature infant’s peak airway pressures to prevent lung injury. We have responded to trauma calls and prayed that children with spinal cord injuries will regain feeling and movement, and have anguished with families as they considered tracheostomies. To participate in Trail’s Edge Camp is to take our expertise and share some of the best times of their lives. For this respiratory therapist, it has given new “breath” to my career and enriched my life forever.

Mary K. Dekeon, RRT, is director of Trail’s Edge Camp for Ventilator Dependent Children and is a clinical specialist at the University of Michigan Medical Center, Mott Children’s Hospital, Ann Arbor. She is also on the Editorial Advisory Board for RT Magazine.