Thirty Days of Caemon–Day 28: Nurse Caemon

From Jodi

One day while Caemon was experiencing pain from his transplant, one of his nurses walked in with a two-chambered medicine pump, from which dangled two silver keys. Caemon pointed at the top pump and said matter-of-factly, “That one is for the epidural.” The nurse’s jaw dropped as she whipped around looking from me to him incredulously. Her expression—which said “did I hear him right?”—was hilarious, and it begged the question, how did he know the pump was used for both morphine drips and epidurals? Obviously at some point, he heard it from another nurse, stored away the information, and pulled it out of a hat at just the right time to surprise and delight Nurse Sally, one of his best buddies in the hospital.

Caemon admired and emulated all of his nurses, or the ones who indulged him, anyway, which was almost everyone. His relationships with his caretakers were extraordinary; with them, he played, he learned, he worked, and he grew. This, I was told repeatedly, was unheard of with kids his age. Usually when nurses walk into the room of a toddler, they are greeted with crying, tantrums, and generally uncooperative behavior. Not surprising, really, given that these kids are tethered to their beds, unable to explore. They are poked, examined, and forced to take oral medications that taste like soap, or worse. How are these children supposed to cope in a foreign environment where they have absolutely no control and no power? Even adults crumple under the strain of long-term hospitalization and treatment. Well, Caemon found a way to cope, to feel empowered, and in so doing, taught a lot of people about what a child is capable of given the encouragement and opportunity.

The first week in the hospital, Caemon was too sick to notice his surroundings, but as he began to feel better, his curiosity took over. He was fascinated with the dangling objects his doctors and nurses hung around their necks: stethoscopes, ID badges, flashlights, etc. One of his nurses caught on to this and gave him a real stethoscope—not one of those fisher price plastic ones, but a real, operational stethoscope—one that he could keep. He very quickly learned how to examine his teddy bears, first listening to the heart, and then the lungs in the back. No one told him how to do it; he just copied what others were doing to him.

He covered his bears with tape and Band-Aids, and before long began acquiring plastic medicine droppers, one of his rewards for cooperating with the oral meds. He hoarded these, collected them in every size and color, and his stash grew so big, we had to secretly thin his cache from time to time. Pretty soon, someone gave him actual tubes with real lines, lines he could “flush” and put caps on. He practiced flushing these lines and listening to human hearts and lungs with his stethoscope, insisted on taking his own vitals, and took particular interest in the nurses’ pagers and phones. He didn’t just play with the tools and gear around him; he was in training. He learned what these instruments were, what they did, what they were for, and he acquired an unbelievable amount of information about his treatment. The focus and intensity he exhibited while working with these objects was truly extraordinary to behold; so was his grasp of what was happening to him.

“I’m pushing the chemo in and the leukemia comes out” he explained once while engaged in his work, his tools spread around him as he focused intently. By this time, he had a toolbox stuffed with every type of medical supply imaginable, from mundane bandages and swabs to more exciting tubes, clamps, IV bags, and supplies too big to fit in his box, supplies sent by RT (Respiratory Therapy) because they also wanted to honor his love of medical play, and my son knew what all these tools were for and how to use them.

How much he understood about chemo, leukemia, IV’s or any of the world he found himself in, I don’t know. But he had the language to ask questions, to listen to the answers, to engage, and to act accordingly. His language skills allowed him to have conversations with people, and I have been told that he exhibited more understanding of his environment than children much older than him.

Timaree and I purchased a set of children’s scrubs embroidered with his name, meant to be his Halloween costume that year, but he was so enthralled with nursing that we gave the scrubs to him early. He was so proud wearing them, and he wore them often, always introducing himself as “Nurse Caemon” when in uniform. His nurses also wanted to adorn him, and one made him an ID badge that looked official, like his; they gave up their flashlights and emptied their pockets of whatever supplies they had, all because it made him happy. It made him feel connected, useful, productive, and valued.

His training advanced enough for him to visit the supply room, perform his own charting at the nurses station with Amber, and to learn to program IV and medicine pumps. Nurse David taught Caemon how to flick the air out of his lines to deal with his constantly-beeping pumps.  He acquired his own patients and gave Timaree and I PICC lines, dressing changes, and whatever else he was in the mood for.

His medical play overshadowed other types of play he had previously been interested in, and when he was allowed to visit the playroom, he showed limited interest in other activities, almost always heading for the medical play area first. He would stock up on supplies and call us over for our treatments. In the hospital, Caemon needed the Nurse Caemon identity, the skills and words that came along with it, and he needed the camaraderie this mutual interest built between him and the staff. He found his own way of coping through medical play and blossomed because of the confidence it helped him build.

Medical professionals know that medical play can be a powerful form of therapy. Or it can be just play, a new set of toys to manipulate. Kate recognized Caemon’s keen interest early on, and in handing him his first stethoscope, handed him a way to feel empowered, and he grabbed on to it. It got him through some really tough moments, and I cannot tell you how grateful I am that he had this to lean on. But even the most seasoned hospital staff were gobsmacked at Caemon’s level of interest and aptitude for nursing. It wasn’t just his verbal skills, but his ability to remember and implement everything he was being taught, even a throwaway comment about an epidural. They have never seen anyone like Caemon before or since, and for that reason, his impact is felt very deeply by them, even now, two years after his death.

We make very few visits to the hospital where Caemon died, for obvious reasons. Last week, we got a tour of the new hospital at Mission Bay while dropping off the book drive donation, and we ran into a few friends who stopped to reminisce about Caemon. They miss him, the most adorable little nurse they ever knew, and to tell us they also carry on his legacy of helping kids cope through medical play. They use what Caemon taught them about the power in having agency in one’s own care. He lives on through them in a very tangible way when they employ these strategies, and in so doing, help other patients cope.

Because this part of his legacy is so unique and specific to Caemon, C is for Crocodile made an additional contribution to Child Life Services last week: a box of blank ID badges, badge holders, colorful lanyards, flashlights, and a dozen sets of scrubs in various sizes—all the dress up gear for the young nurses and docs in training. Medical play at the Children’s Hospital will expand to a new level because of Caemon. How awesome is that?

I don’t know what he would have grown up to become had he been allowed to live, but I know what he was for the last few months of his life: he was a nurse, and a damn good one at that. Epidural indeed!

Below are a couple of Caemon’s medical play videos: