Stars Burning Brightly in the Night

What does it take for you to achieve your maximum potential? The chance to try without repercussions if you fail? Friends who cheer you on? What about a working manual wheelchair and someone to push it? Anti-seizure medications three times a day? A pump to run special formula into your stomach at night? Or a respiratory therapist to clear your lungs of secretions around the clock?

"Heaven's Very Special Child,"
a poem by John & Edna
Massamilla associated with
the special-needs community.

These are all things that happen at Camp CAMP (Children’s Association for Maximum Potential) in Center Point, TX. CAMP offers week-long summer camps for kids and adults with special needs—and their families—during the summer, as well as respite days during the rest of the year. I first volunteered at CAMP as a junior medical student, spending a week as a 1:1 counselor for a teen-aged girl with tuberous sclerosis who loved dress-up and tickling and also needed help dressing and showering. I came back a few years later as a senior medical student to be a healthcare volunteer, administering medications and staffing the infirmary for two weeks. (You can read my blog posts about those adventures here and here.) During the second trip I learned about transitional care, a subspecialty of adolescent medicine that helps young people with special needs transition from pediatric to adult care. (Later I found out about complex care, a related niche of medicine that takes care of such patients across their whole life spans; it’s the reason I chose to train in a combined Internal Medicine-Pediatrics residency program.) The chief residents helped me squeeze a week of vacation between hospital rotations this summer so I could return as a healthcare volunteer for a medically complex week.

My campers this week loved dogs, the color pink, Justin Bieber, Good Night Moon, swimming, and karaoke. They also carried diagnoses like cerebral palsy, spina bifida, holoprosencephaly, and spinocerebellar ataxia. My job was to work with their counselors, lead staff, and other healthcare volunteers to enable them to have a blast by giving their meds (by mouth or G tube), monitoring their hydration status in 100+-degree heat, and assessing their bumps, bruises, vomiting, and seizures. I (re)learned how to catheterize for urine, paddled a canoe, gave a lecture on cerebral palsy, and did a lot of singing, dancing, and laughing. I also did a fair amount of apologizing for getting something wrong, from forgetting supplies, to taking too long to find the right place to put the catheter, to getting the already flexible schedule wrong and showing up early or late, to being perceived as talking down to a camper. “Camp is for the campers.” That’s what/whom we’re here for.

  

Sunday: Hot. A 1-hour drive to the camp was followed by a 3-hour orientation outside, where shade was increasingly insufficient to keep us comfortable. A quick lunch in the AC was followed by 4 hours in a pavilion, checking in campers, learning about them and their medications, and sweating. This was immediately followed by prepping and giving dinner medications, eating dinner, prepping and giving night medications, and (re)cathing one camper. Another of my campers was already sick with a fever. Then there was “grand rounds” in the infirmary. When I got off duty at midnight, I still needed a shower to feel human enough to go to bed. When I told my bunkmates I didn’t mind if they used the toilet while I was in the shower--I believe the actual words that came out of my mouth were "I'm not squeamish"--one promptly came in and threw up (she’s pregnant in her first trimester).

Monday:  Stupid hot. Missed “Tribe Pride Day” because I didn’t pack anything in Cherokee red; wore an old CAMP shirt instead. Had lecture in the morning and staffed the infirmary in the afternoon. That camper with the elevated temperature went home, and another departed to the ED via ambulance after multiple seizures from the heat. Code brown in the pool.

Photo courtesy DG.

Tuesday:  Hotter than stink. Forgot I had to both prep my morning meds and cath a camper in her cabin before breakfast, so I set my phone alarm for 7:15. At 7:13, I woke with the sudden realization that I was already running 15 minutes behind. Good thing the day’s theme was “pajama day”; my unwashed face and uncombed hair were authentic. Successfully cathed the camper with my left hand. Paddled a canoe for 1.5 hours on a shallow part of the Guadalupe River (right). We could see fish in the water and birds flying while the breeze blew through the trees. A dragonfly sat on my finger. This is always one of my favorite parts of CAMP. Code brown in the pool.

Wednesday: Less hot. Wore my CAMP shirt backward for Wacky-Tacky Day. On time or early for all my medications and procedures. Walked alongside and steadied one of my campers as she conquered her fear and rode a horse for the first time. Watched another teenager with balance and coordination problems repeatedly nail her counselors with soaking sponges in “wet dodgeball”; she managed not to trip over the garden hose and sprayed me too, while laughing gleefully. Napped during “toes up time” but still ready for bed at 11pm.

Thursday: Heat almost bearable in the shade. Decorated my Gilligan’s hat with all the pins (“swag”) off my white coat and backpack—except the copper paraguard IUD, which had fallen off who knows where.  Drank my morning tea while swinging in a hammock and waiting for wake-up time at the camper cabin. Gave a 45-minute long lecture on cerebral palsy using the pediatric physiatrist’s slides, whose fonts and punctuation I had standardized. Gave my business card to a medical student who is interested in complex care. Stayed up late for the star ceremony.* Full moon.

Friday: Still hot. Woke up at the usual time, aka an hour before I had set my alarm. Packed and nursed a mug of tea before giving morning meds in my official pink t-shirt. Spent 4 hours sweltering in the arts & crafts pavilion waiting for parents to retrieve their children’s medications. A couple of interns gave me a ride to San Antonio International Airport, where I enjoyed almost two hours of air conditioning and internet before my flight to Chicago. Touched down in Pittsburgh at 2:30am after delays in the Windy City.

Me and the nursing student with whom I worked this week.

*This is the fourth star ceremony I have attended, and it was the first time it really meant anything to me. After the campers have been put to bed, the counselors and staff sway in a circle on a dark hillside watching kerosene on a metal star shape burn out while a couple of star-themed songs play (listen here). The first couple of times it bothered me that I didn’t know the words. This time the ceremony was dedicated to two campers who had passed away: one who had just attended camp the week before, and the other who was supposed to attend this week. I didn’t know either boy, his diagnoses, or when, where, or why he died. But I imagined the one who had just been to Camp CAMP had decompensated, maybe developed a pneumonia, and died in a PICU. I cried. I cried for the resident who declared his death—it could have been a brand-new intern who has only been a physician for a month. The PICU is often a traumatic place, but especially when a child dies. I cried because that resident only knew him as a patient, a couple of lines on a sign-out sheet, and maybe as a source of frustration, the cause of more paperwork. She didn’t get to know him the way his family and his CAMP counselors did, as a boy with a smile that lit up the cabin. That’s what we’re here for.