Oscar finally got out of surgery around 9:45pm last night, about eight hours after he was wheeled off. Dr. Hu called bearing mostly good news – he’d tolerated the surgery well neurologically, she got a better than anticipated correction, and she saw no need for the thoracoplasty. (I haven’t seen the x-rays yet, but the correction does look fantastic…a straight-line incision down the middle of his back.)

They kept him intubated overnight because he got out of surgery so late. He failed the first respiratory test this morning because he was still so sedated, so most of today has been about managing his discomfort while reducing the sedation so he could be extubated. When he was awake enough, he tried to communicate through hand gestures, and finally a communication board. He was able to tap out “I feel like there’s a serious problem” and “I feel like I can’t breathe” and then started to soundlessly cry when he heard me repeat his words back to him. The nurses and MDs here have been great, heeding our requests for N95s and no discussion of food in the room, and above all, kind. His nurse immediately paged the respiratory team when I expressed Oscar’s sense of urgency – they came pretty quickly and got that thing out of his throat. 

His bones, however, were much softer than expected – Dr Hu actually called them “mushy”. Not exactly what you want to hear after screws have just been placed at all thirteen vertebrae from T3-L3. Screws we’re hoping will hold his spine in place, straight and de-rotated forever. Now we’re exploring whether his hypophosphatasia, that rare bone disorder he has (but has never really bothered him, or his siblings, since Ruby’s teeth fell out at age two) is to blame. Or is it the PWS? Growth hormone is supposed to have been helping, as was testosterone, so we’ll need to do some troubleshooting. Mushy bones also mean he will definitely be in a scoliosis brace post-op until we know the screws are adequately fixed and the bone healed.

He’s resting comfortably now, and we’re hoping we’ll be able to get him to sitting soon, to start taking some liquids, and then maybe even a walk. But he’s still so sedated that I don’t know if any of the will happen. It feels like we’re a day behind where we’ve been for the other surgeries…and yet we also know we’ll get there. 

Thanks for all the support — I read each and every message to Oscar at the peak of discomfort and before he could talk, and his free-flowing tears told me he was overwhelmed by the love even if he couldn’t speak the words.