The Dr said he will most likely still be treating Isaac until his own retirement (and he is not old) but the hope is that he will not need such a big operation again, if at all. The surgery went well (it was three hours... in which I paced around, ran to the toilets feeling sick, drank tea, paced some more, stared blankly at walls, couldn’t face calling anyone, soaked in the misery of a hospital amid pandemic...). He predicts that once recovered, Isaac will feel like a new person as it was worse than he expected inside, full of infection. He said the impact on his quality of life in these recent months would have been huge.
In recovery, I found Isaac delirious, shaking so much that I had to hold him from falling out of bed, and scratching like crazy.
The nurse called the anaesthetist back, who said it could be a reaction to the anaesthetic or the pain drugs, and prescribed IV antihistamines. These worked almost immediately. Only his pain score was rising (Isaac rarely complains, so when he says his pain is 9/10 I know it to be true), so they prescribed IV fentanyl, saying that if it was the fentanyl that he was reacting to, it would be fine now he had the IV antihistamines. Only, while the fentanyl sent him back off to cloud cuckoo land, I peaked at his chest and back, and he was covered again in a raised, angry red rash. It took a few hours to calm, and it’s one to add to his notes for future reference (although, they say they would not rule out using it again, as it’s such a powerful drug, but they can treat with antihistamines at the same time if they need to).
Neither of us are squeamish, so the bleeding, which lasted maybe 12hours, was manageable, but while he was floating on the morphine high, blood was coming from his nose and mouth in clots. At times he would retch or cough and wasn’t even sure where the blood was coming from. On the plus side, he needed little oxygen post op, and his sats remained OK throughout (big positive for him).
We got back to the ward a few hours later, where he rested, and we tried to remove the dried blood so he looked a little less like he’d been in a fight or accident. We had the option to stay, but his Dr was happy for us to go home and call if we needed anything, so we came home for the night, and he slept and slept. On crawling onto the sofa myself, the exhaustion hit me and I knew with absolute certainty that I when I woke up, I would be ill. Sure enough, I am full of cold, and so is Anouk. Now we must try and avoid passing this on to Isaac - it’s all he needs.
He is now back at the hospital to be checked over, as he feels that one of the stents in his nose (which need to stay there for three weeks) has dropped down. Because I’m not well, I can’t be with him, which I hate. We just want him home now, warm, safe and recovering. For once, it’s not such a bad time to be locking down.
Sorry, not the most cheerful of posts. I feel like someone mopped the floor with me. But under this snotty exterior, I am relieved as fuck and so, so glad. The surgery is done; Isaac can see! And yes, it’s going to take a few months to feel the full results, but he will, and this in turn will help his lungs.
And I know I always bang on about this... but, that boy? He’s a fricken hero! ❤️
PS: and just to be clear, this was all micro surgery, up through his nose. So no scars, and no peeling his face off as someone had asked, thankfully! To see amazing surgery like this happen at our very own Addenbrookes and the Royal Papworth, including lung transplantation, I urge you to watch ‘Surgeons, the edge of life’ on the BBC (pictured below). Amazing stuff, for the non squeamish.
Pictures from Addenbrookes, where he is treated now, and the Royal Papworth, where he will attend next year when he leaves paeds, which is now next door and the grounds of my pacing up and down.
