Albie has been paralysed and sedated since Wednesday morning’s arrest. The ECMO machine oxygenated his blood so during that time his lungs weren’t working. He lay almost stock still and eerily silent. It was far from right. Now that he is off ECMO his lungs are having to work again – first on the ventilator and then, eventually on their own. Its a bigger task than I initially thought. They are filled with gunk from being still and the morphine he is on represses his instinct to inhale so the ventilator remains necessary for now. Today to wake him up a little bit, and to encourage him to start to breath a bit more himself, they reduced his morphine dose. It didn’t take long for Albie to begin to wriggle, and then, to swim up from wherever he has been and open his beautiful eyes again. They were crooked, bleary, drug-addled pinpoints but there our gorgeous Albie was. Hello honey, how I have missed you, welcome back.
He’s pretty beaten up. His zipper that runs up his chest is a lot bigger now than it was on Tuesday, he has drain sites, and cannulae sites, and marks all over his head from the brain monitors. He has IV lines in both his hands and his neck. Marcus says he looks like he has been eaten by a hungry badger. I am afraid at the moment he’s probably right. But in a while, I think his scars will be so beautiful. What a story of resilience they will tell.
Albie has been on a substantial amount of drugs since his surgery last Tuesday and now he will be slowly weaned from them. Its almost inevitable that he will suffer a morphine withdrawal. Even today’s reduction caused massive twitches and shakes in his body and that’s just the beginning. The consultant has warned that Albie will be waking from “the bender to end all benders” and that it is often in the extremely irritable, inconsolable days that follow ECMO that many families crumble. I hope we will be different to this. I hope we can remember where we have just come from. I want to be grateful to hear his cry again, be thankful to hold his body. Its rough and tough – my poor boy having to suffer drug withdrawal – but by heck, its a darn sight better that what we were facing a few days ago.
So we can’t yet say Hooray! Its Over! but I can imagine that day. And until then, this life, right here and now in this Intensive Care Unit, is pretty awesome. Yes, its filled to the brim with hurt and love and grief and light – but at least its filled to the brim. How close we came to something a lot more empty I just can’t tell you.