In the obscure world of ultra-marathon swimming, those who complete a swim don’t always get a lot of perks. Swimming the English Channel, completing the Manhattan Island Marathon, swimming the Catalina Channel (or all three) doesn’t get you a juicy book deal or a slot on Oprah- though it could happen, if you undertake a swim that has never been completed before. Diana Nyad, in her swim from Havana, Cuba, to Key West, was one such swimmer — the only confirmed person to survive the fickle 110 mile swim.
Sitting here in the hospital after two incredible days, I find myself trying to find the right way to describe decannulation, and what that means to us, and ultra-marathons seems to fit. It’s 4a.m., and Jack is fast asleep. There are no alarms, though he’s hooked up to his pulse-ox. The room is strangely uncluttered, but for the usual underfoot items: my purse, a winter jacket, a smattering of new toys. No ventilator. No piles of medications and strange contraptions to deliver them. I could get used to this kind of stillness.
I think what I’m experiencing as I watch his great numbers on the monitor and listen to his unaided breathing is a bit like witnessing an ultra-marathon swimmer stride out of the water and onto the beach. It may be a little too soon to say for sure, but I think that today Jack has climbed onto a shore which seemed unattainably distant for a long, long time.
At 12:30 on Monday, November 26, 2018, we were in the Nemours PICU, where our journey began. There, sitting in the center of a crowd (several doctors, nurses, and Mom, Dad, Nana and Da) Jack removed his trach himself and, with a beaming, crooked smile, tossed it on the bed beside him- 1,727 days after it was first placed. It’s been his friend and lifeline for a long time- and his signature too- he worries about his friends not recognizing him when he goes to school without it. It’s also been a millstone tied about our family’s neck for those 56 months and 21 days. Such a tiny little thing of plastic and silicone, weighing in at just over an ounce, but with it has come a kind of forced march of sleepless nights, tracheitis infections, missed school and work, nursing troubles, difficult calls to insurance companies, durable medical equipment deliveries and errors, lengthy discussions with teachers, school nurses, case managers, and transportation.
Watching Jack pluck it out so matter of factly, and then, with a twinkle in his eye, ask every person who enters his room to “look- what’s different!?” feels like an ending to a marathon.
Of course, we can’t stretch this analogy, this image of a triumphant finish, too far- it easily warps and breaks. I must be clear that this is not a narrative about a miraculous cure. In preparation for this step, Jack underwent many tests this summer and fall, including a salivagram which investigated signs of aspiration.
He has failed all swallow studies (there have been three) to date. The salivagram study showed much the same. He has only a partial, not truly functional, swallow, and still aspirates some of his secretions to his lungs. The trach was placed to help him to protect his lungs from this threat of aspiration and subsequent pneumonias. So what has changed? Why take this step now?
The answer isn’t straightforward. In essence, nothing has changed. However, compared to many trach kids, Jack has a strong record of avoiding pneumonia, so he seemsto be able to protect his airway. As he has grown stronger, developing physically, Jack has needed his ventilator less and less, and it’s now been several months since he was hooked up to it- another reason that a trach is not as essential as it once was.
For Jack, the balance of factors had simply shifted and the trach was causing more problems (infections and reduced independence) than it was really solving. So, for all of our exhillaration at leaving the trach and all of its logistics behind, this isn’t really an ending as it is the start of a new kind of expedition. The first trial of his readiness came in the hospital as we waited to see if Jack could maintain his oxygen during sleep without the aid of his trach, a feat which he has passed with flying colors. The next trial will be whether or not his first cold after this decannulation will set him back with a serious pneumonia.
One thing that I have learned is that medicine is not so much a clear equation or list of checkboxes as it is a careful reading of evidence, a navigation around dangers based upon expertise and lived experience, a series of team decisions.
In her historic swim, Diana Nyad faced dangers of dehydration, hypothermia, jellyfish, sharks, and unpredictable seas. She also had to manage incredible monotony and sensory deprivation during the 53 hour experience, and when she emerged from the water, people saw a lone hero defying the odds. But something worth knowing about ultra marathon swimmers is that they are never swimming alone. Perhaps they swim in carefully managed events with plenty of staff on hand. Or, perhaps they are accompanied by a single partner in a kayak who paddles alongside, ready to intervene and support. In Nyad’s case, she swam behind a specially designed catamaran carrying a 35 person support crew. In addition to her managers and handlers, that crew included navigators to keep her on a straight course, boat operators, weather routers, medical staff, and shark experts. I imagine her team watching her progress, reviewing data, discussing, correcting course, changing plans here and there, keeping the goal in mind and working together to bring their knowledge of the swimmer, the seas, and the risks to bear in the task of supporting this unique person in her unique journey.
While under observation, Jack has enjoyed visits from a parade of people who have supported him along the way. Sam arrived with a present specially picked for his brother and a “two thumbs up” card. My parents stayed and played lots of go fish to pass the time while we talked about the hours they’ve spent driving to and from NH to help us. Jen, once our PICU social worker, sat with us for a long while, remembering and celebrating. Jana, child life specialist who helped us reintroduce the twins to one another after their three-month separation met us in the new child life clubhouse while Jack played. Bob, the RT who first told us “It’s Jack’s world, we’re all just living in it!” came by with huge hugs and smiles. Abby was there, the PICU nurse who calmed Jack during some of his worst pre-op nights with a magical “chest pat”. Kim and Mary, poked their heads in, PICU doctors who had seen him through his post-op complications. Jack’s pediatrician (and super mom of another amazing medical kiddo) Melissa stayed for a long chat. Even Dr. Piatt stopped by, looking a little older and more distinguished, but still sporting his characteristic bow tie. We texted teachers from the School for the Deaf, nurses, coworkers and family and friends near and far. It’s a huge crew that has followed and supported this kid. Survival, after all, is something that we do together.
While we were finishing out our second day’s stay, the pulmonology team asked if I would be willing to meet with the parents of a 2-week old little girl just a few doors down from us. The otherwise healthy, full term baby with exquisite brushstrokes of red-gold hair had been trached almost at birth. Her shell-shocked parents had done their first trach change that very day. “But how are we going to do this?” they asked. “How will we ever go back to work? How will we transport her? How will we carry all of this equipment?” We talked for a long time, and I watched them swirl the bittersweet new vocabulary of this unexpected ingredient in their daughter’s life around their mouths, resolute and terrified. “You can do this,” I told them. “You’re not alone. Take it one day at a time, and start by building her team.”
As my own little marathon swimmer stands on this unfamiliar coastline, a small bandage on his neck and a huge support team cheering in the background, I look forward to introducing him to the campouts and waterslides previously out of reach but which he will get to experience on this new shore. As for me, I can’t wait for the simple pleasure of going to bed when I am tired, rather than waiting for a nurse to arrive. I look forward- with some trepidation, but a lot of hope- to disembarking from this hulking catamaran in favor of lighter vessel as we push off behind Jack as he swims toward new horizons.