The brain. What an amazing, intimate and yet alien mass it is. Sometimes I find myself thinking about the structures of the brain, the vertical and horizontal weave of networked cells: a microscopic, synaptic forest that makes us who we are. I think about Jack’s brain, the intense little machine that it has become, and its limitations. I think about my own memories, represented somewhere within hidden networks of dendrites and axons, some memory pathways so overgrown that they cannot be recovered until they spring to life uninvited through some unrecognized association. You stumble onto one strand, and find an entire forgotten tapestry. For me, in February, associations crowd thickly around like little tripwires. The half-thawed ground, the crackling overhead rivers of starlings on their morning and evening commutes have taken on a dark meaning. The bare trees seem paused, waiting for the blow. When the holidays end, when the semester begins, there is a part of me that starts looking over my shoulder. Sometimes I realize right away that it is getting close to anniversary time. Sometimes it takes time for me to understand why I feel so strangely off-balance.
Rituals are powerful, and we have a ritual in our house that is like a spell that wards off some of those swampy, post-traumatic ruminations. It is time for Bounce Back Day. Each year on February 27 we talk as a family about Jack’s surgery, with a little more detail each time. We look at pictures and we talk about the experience. Then we go do something fun and focus on how glad we are to be together. This year, I thought Jack could pick what we might do. He thought about it, and made some suggestions:
- We can do some Star Wars and Paw Patrol puzzles.
- We can take all the dirty sheets off the beds and put them in the laundry.
- We can all go to the forest and throw rocks in the river.
Ah, the mind of a three year old- both ridiculous and profound. Just look at that list: he wanted to spend time as a family tackling challenges, keeping the household tidy and running, and playing in the woods. I think this three year old child just captured my life’s philosophy.
It’s been a while since readers of this blog had some video content, so I’ve curated a few family videos here. Hope you like them!
As you can see, in the last six months, Jack has become ever more communicative and loves to spin wild stories. He rarely uses sign language now, preferring instead to use his voice. He loves to read, often stopping us to ask if we can explain what this or that word means. He enjoys making up words as well. For a long time everyone was a silly “baroush”, “hatihot”, or “baroonjay”. He cracks himself up with these verbal creations. He can spend a truly impressive amount of time on a puzzle- from 30-piece puzzles with large pieces to mini puzzles of 6 pieces each smaller than a dime. He remains outgoing and open, and will say hello to anyone. (The last time we were at AI for a brief check up, he stopped a custodian in the hallway to offer him a high five. I must say, by the surprised look of delight on the gentleman’s face, I think Jack made his day.)
Sam remains our happy, sensitive soul. Right now his great loves are art and playing any game that involves running around with a foam sword. As you can see in the video, he led me on an adventure under the kitchen table a few weeks ago with his foam sword to fight an annundoolie-flavored dragon (I didn’t know that dragons had flavors!) I think one of my favorite things about Sam is his dancing. It’s getting zanier by the day. He insists on footie pajamas every night and dancing time is apparently right before bed, so the pajamas undoubtedly add to the zany effect of his wild dance moves.
These two bring so much sunlight into our world. It dances through the tangled bracken of our complicated life, illuminating all the unexpected beauty beneath. Three years after we sat in surgery wondering what would be left of our son and of our family at the end of it, we are all walking through the forest and throwing rocks in the river together. It’s awesome.
Medically, we have had an easy year free of hospitalizations. Our first! Jack’s had illnesses on and off but no seizures, no reemerging hydrocephalus or such sudden pitfalls. We have even had some positive developments. First, Jack had a sleep study this fall that he passed with flying colors. The study showed that his brain is functioning normally in sleep and there is no central apnea as a result of his brain injury that would require a ventilator for life. Second, we had our definitive, final MRI showing that his brain continues to grow normally, and his tumor is very much gone. We are now well past the period for re-growth, so we can say that it’s not going to come back. We will only be followed with MRIs every 2 years rather than every 6 months to check on the status of his hydrocephalus. Such a blessing… those words don’t even come close to expressing how incredible it feels to be releived of that burden. Third, we are weaning him off of his ventilator, (first by removing the forced breaths, and then removing the positive pressure that the vent provided, and now he is on another machine (the Airvo) at night. This is a very simple machine which gently blows heated, moist air to an area just in front of his trach. (You can see it in the picture below.) When he is healthy, the work of breathing is all his, and he does well. When he’s got a cold (which is still somewhat frequent) or a fever (also still quite frequent), his 02 levels drop and he does require the vent. Amusingly, he doesn’t like to have the Airvo on as he falls asleep- preferring the ventilator. Some kids like teddy bears, some kids like hard plastic tubing, I guess…?
We’ve faced continual trouble finding nursing coverage, so lately we’ve had to cover 1-2 night shifts per week ourselves. As I was writing this post, I learned of another nurse leaving the agency, which will mean that we no longer have Sunday, Monday, Wednesday, and some Friday coverage. Even on nights when Jack is healthy, covering the night shift ourselves is a trial. We either must sleep on his floor in short spurts while waking to check the Airvo, his food pump or his oxygen monitor, or stay awake. Each month that Jack does a little better off of the ventilator gives us hope that someday we can let go of constant nursing coverage, but we still desperately need it right now. Jack is fortunate to have a great team of nurses at his side. The little man has developed quite a temper, and our nurses do a great job of not taking too much of his nonsense, while giving him real affection and great care.
This May, we expect to have a great visit with pulmonology. We hope to get him off the vent and discuss what further diagnostics might be needed to reassess his swallow in light of the fact that he has had so few pneumonias this past year (and is now participating in all meals- tasting everything but also clearly ingesting some of what he tastes.) I think the future for this little boy is very bright indeed.
Thanks as always for keeping Jack and Sam in your thoughts!