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From Bedside to Bunkside: A Pediatric Transplant Nurse at Summer Camp

Rachel Ryan, BSN, RN
The Children's Hospital of Philadelphia

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dragonfly camp"This is a repeat-after-me, do-as-I-do song.... There was a great big moose. He liked to drink a lot of juice."

rachel ryanI am in a rustic, high ceiling, barn-like dining hall full of round tables with a variety of wildlife displayed on the walls, and bright green trees peering through the windows. I am surrounded by 30-40 people of different ages and sizes with smiles on their faces, hands on their head in true antler fashion, singing at the top of their lungs. I am at camp! But this is not just any camp—I am at a camp specifically created for children who have had a heart transplant.

But let me start from the beginning. In the summer of 2008, I had dislocated my finger and was unable to perform my duties as a registered nurse in the pediatric cardiac step down unit in which I worked. Unbeknownst to me, a team of co-workers including a heart transplant attending, his pulmonologist wife, nurse practitioners, child life specialists, and a psychologist, were packing their bags for the inaugural year of heart transplant camp (which I later learned was the vision of a transplant recipient's mother and had been in the planning and fundraising phase for the last year). The night before camp was supposed to start, I received a call from one of the child life specialists telling me about the camp which would be a week-long overnight camp for children ages 8-18 who had a heart and/or lung transplant or had pulmonary hypertension, asking if I would be able to come for a few days because they needed more nurses. I had no idea what I was getting myself into but I did not hesitate to say yes.

I packed up what I "thought" I might need for a week at camp (in the four years since, I have mastered the necessary supply list—a foam mattress pad, diet coke and Swedish fish to name a few) and started on my journey. I arrived at camp on Sunday night and was greeted by my co-workers and the counselors who would be organizing meals, games, and activities for the week. After a brief meeting about what our medical duties would be, I headed to the air conditioned bunk halls (an accommodation made specifically for our campers), hopped up on the top bunk, something the kid in me couldn't resist but at two in the morning the adult in me regretted, and went to sleep eagerly anticipating the campers' arrivals.

prepping for med checkThe next day the nurse practitioners and I sat at a table in the dining hall where we completed a medical check-in with each camper as they arrived. This consisted of a review of allergies, a screen for recent upper respiratory or gastrointestinal illnesses as infection precaution, and a medication reconciliation which included drug, dose, time, and route of administration. Each camper was provided with a pill box into which, after the medications were reviewed, a week's supply was counted out and placed in the appropriate time slots. Each camper had a medication sheet with enough copies for each day of camp which would be used to document medication administration, line /dressing changes and pump checks (for the kids with pulmonary hypertension on drug infusions), blood sugars, insulin, etc.

After the campers were checked in and dorm rooms were set up, it was time to for the parents to say goodbye. Cell phones were not allowed at camp so once they said goodbye, they would not see or hear from their child for a week. For most parents this would be not be a problem, and might even be a nice break, but for these parents it was much more. Most of these children had not left their parents' sides since their diagnosis and transplant much less overnight; for some, that was a few months to years ago, but for others that was their whole lives. Despite the anxiety and worry that came with leaving their children, these parents did so because of the trust and comfort they had with the medical team who had cared for their children in the hospital and would now care for them at camp. Stronger than their own discomfort was the desire for their child to have a "normal kid" experience with their peers, an experience many parents take for granted and none of these children were guaranteed to have.

a crab!The camp routine consisted of the wake-up bell at 7:30 followed by breakfast at 8:00, a morning activity, lunch, an afternoon activity, dinner and an evening activity before bed somewhere around 9:00. A back room in the dining hall served as the "med room" and after each meal, the campers were brought back in groups of four or five at a time. Our goal from the beginning was to have "med time" be safe but as quick and seamless as possible so as not distract from camp activities. By the end of the week, we had "med time" running like clockwork, taking only 20-30 min to administer medications to 19 campers.

"Med time" would become one of my favorite parts of camp. We quizzed the teenagers about their meds as we gave them, but quickly discovered that for the precocious 8 and 9 year olds, this step was unnecessary. These savvy kids not only knew all of their medications but were quick to point out our shortcomings as med administrators, such as the fact that we were using a 3 mL syringe when at home they use a two 1mL syringe, or the audacity we had in providing water for sildenafil when at home they take it with juice. In addition I witnessed innocent exchanges between campers which at any other camp would be "You have those sneakers? So do I!" but here was "you take mycophenolate? So do I" or "I used to take that medicine until I got my transplant" followed by "I need a transplant someday." Each of these moments reminded me of how amazing kids are in their ability to adapt and cope with whatever they are given.

In addition to medication administrators, we were hydration monitors (tacrolimus is hard enough on the kidneys without adding running around outside in 90 degree weather), infection preventers (hand sanitizer is a must after holding toads and fishes), and sunscreen applicators. By the end of the week I would be saying "Drink more water", "Did you purell?" and "Did you put on sunscreen" in my sleep. When we weren't doing all those things, we were campers.

field gamesThe kids were divided into "tribes" based on age and each tribe was accompanied by two medical staff and a psychosocial support person (child life specialist or psychologist). The tribes would separate for the morning and afternoon activities and reconvene for meals and evening activities. We played field games, swam in the bay, went fishing, picked berries, went on a boat, made tie-dye shirts, got water dumped on our heads, made "echo-art", played cards, sang songs, pulled pranks, went on the zip line, and road the giant swing. Words cannot describe how rewarding and inspiring it was to see what these kids could do and to be a part of it; to watch the same girl who 10 months ago was in the hospital with a central line on inotropes waiting for her second heart transplant, climb a fifty foot tree ladder to a platform and fearlessly jump off. It reinforced why I do what I do.

The week passed quickly and suddenly it was time for camp to end. We created a slide show for the parents highlighting the week's activities. Instead of watching the slide show, I watched the parents. I watched their mouths hang open in awe at the picture of their daughter racing down the zip line; I watched them laugh at the picture of their son kissing a fish; and I watched them cry at pictures of new found friends with arms around each other and smiles on their faces. At the end of the slide show, the entire hospital staff was called to the front of the room. I stood there with my co-workers, who by virtue of the experiences we shared over the last week had become so much more, and looked out at the parents and campers as they thanked us for our time with a standing ovation and couldn't help but get tears in my eyes and goose bumps on my arms. I had accidentally become part of something special and I couldn't have been more grateful.

This summer will be the fifth year of camp, and while no year will ever be as magical as the first, each year is full of new lessons that remind me why we do heart transplants (which I have at times questioned) and reinforces the amazing spirit and resiliency of children.

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Disclosure Statement: the author has no conflicts of interest to disclose.