Four weeks ago, today, Sam and I “woke” from our most profoundly sleepless night in thirteen years and, those who know us well, know that there is a significant collection of sleepless nights in the running for that accolade. The Precedex/Morphine cocktail Sam had been fed through the CVP line in his neck after surgery (Supraglottoplasty/Subglottic Stenosis follow-up) ensured a deep-enough post-theatre nap…but just as I was about to unpack my illustration tools for a kiddies’ storybook recently penned, in anticipation of the three sedation-filled days which were meant to follow, Sam’s eyes fluttered open. And there he and I sat throughout that Wednesday night…a 54kg strapping young lad, without the cognitive or communication skills needed to process the absolute terror of his surroundings and all the lines and tubes invading his (already) sensory traumatised body, too petrified to so much as move his head. And an emotionally depleted mom, at her most helpless and heartbroken, watching her precious boy’s tears trail down a bewildered face, frozen into a silent cry, devastated by not being able to comfort him the way he wanted. And I thought about my little book (Sam’s Mighty Roar) which shares (in an age-appropriate way) why Sam’s frustrations and anxieties often end in shouting fits, mentioning anxiety triggers like sensory overloads and the like, but not moments such as these…moments which so many of Sam’s differently-abled peers have to overcome, often with an unintentional disregard of the emotional impact which, with their lack of adequate communication skills, is regularly commended as a “high pain threshold”. On this night Sam’s roar was not so mighty. But his fighting spirit was!
A few hours later when the ridiculously uncomfortable chair I’d had to sleep in (thankfully so, as it kept me fully awake through Sam’s first night) began to feel just the right amount of comfortable for a late-afternoon nap, the first signs of that Mighty Roar resurfaced, prompted by a tummy which, after a 48 hour long fast, was no longer bowing down to anxiety. Jelly was administered STAT and shortly thereafter, despite Sam’s urine catheter removing itself (OUCH), Sam actually settled in for a decent night’s sleep. Fellow DJ’ing parents (Different Journeying parents – not the music kind…although possibly them as well) will relate to the consistent flow of movement and noise in an ICU though, so mom, instead, watched how the moonlight rendered the steady movement of a crane in the harbour as it loaded a ship, a peculiar alien-like illusion and pondered on the many entertaining moments sleep deprivation provides!
By Friday morning, after doing well on just 10mls of nasal cannular throughout the night, the supernatural healing which had been prayed over Sam by our church community was boasting its glory as both Sam’s oxygen and sedation cocktail were weaned off and, after consuming three helpings of macaroni and cheese (yes…breakfast, lunch AND supper!) and acquiring a new drinking skill, Sam’s feeding tube was removed on Friday evening. Another peaceful night ensued and mom even managed to catch a couple hours of sleep as well, with the occasional wink from my alien friend. Late on Saturday afternoon the planned five-day ICU stay was firmly cut short as Sam made his way home from his 24th surgery (give or take a set of grommets or two forgotten from his medical overview – mom fail #1752).
The Supraglottoplasty, to repair Sam’s laryngomalacia, was extremely successful (as shared by Sam’s phenomenal ENT surgeon), requiring less tissue to be cut away than originally thought. Sam’s Subglottic Stenosis though is something he will continue to live with, exacerbated by fragile lining of Sam’s airways and making the airway vulnerable to rupture should the incorrect size tube be used during intubation. Hopefully the remedied laryngomalacia will alleviate the need for so many intubations and has already proven its success by creating the airway space for an EVEN MIGHTIER roar! Yes! Who saw that coming??
Just a week after the surgery, while still navigating the usual (but oh-so manageable) emotional rollercoaster that follows all of Sam’s procedures (heightened anxiety and clinginess, night terrors which result in even-more-than usual sleep disruption, etc), I found myself in awe of and unimaginably thankful for how incredibly well Sam recovered from the surgery…and, too, for the outpouring of love and care from so many…thank you for all the messages, thoughts and prayers.
