Part one (not because this story is exactly worthy of chapters, but because I am both wired and tired):
After a few days of IVs on the ward, and a LOT of questions about how it works between the two neighbouring hospitals (which seem to communicate very little) and very few answers, we made it to Addenbrookes for his sinus surgery on Monday. He was wheeled through by a porter (to his immense embarrassment) through a strange underground tunnel between the two. At one point, in the eerie silence, the lights flickered off and we found ourselves in a flooded section between the two, walls drip dripping. Not for public access that one. Felt all a bit too ‘The Shining’ for me.
Once there, no one had any idea that we were staying next door at Papworth, and needed to get back there later that day for IVs. Isaac is super smart, but how anyone would navigate this alone is beyond me.
We were first on the theatre list, for which we thanked the stars and moons (we’ve been there many times before, late on the list, nil by mouth (for Isaac, you may as well say ‘bury me alive with snakes’) only for theatre to overrun and the operation be postponed.
The anaesthetist didn’t seem overly enthusiastic about anaesthetising him. We face this almost every op, having to list off his many medications, infections, and weird arse medical history. In the end, we pretty much agreed that this was going to be as good as he gets, and we might as well crack on.
I was thankful to walk him to theatre as normal (where he amusingly tried to pull off all his probes while we wrestled him back as he lost consciousness).
Afterwards, I had to walk (madly pace) eat (sip Diet Coke nervously) and kill time (I went back to his room in Papworth, and for the first time ever, was pleased to see the pharmacist; no joke, each and everyday on the ward we have to list off all of his medications, times and doses to the pharmacist, plus every doctor or nurse who comes on duty, which normally gets a... little tiresome. This time, we had a lovely chat about teenagers and how they all go through a non-compliance stage. I could have hugged her).
I’d like to add here that I could quite easily have called my amazingly supportive friends and family at this point, a number of whom would have driven up the moment I asked and bundle hugged me to the floor. The simple truth is that when stressed and anxious about Isaac/something as big as this, I am an anti-social bastard better suited to listening weird old prog rock/grunge on my headphones.
The operation was listed to be three, maybe four hours. I was outside asking to see him after two, and back every twenty minutes after that, until five hours had passed. At first I was told I could not be with him in recovery (now he’s in adult care) but the second person I spoke to (also a Mum, I noted) said of course I could, recognising that he is just 17. But they did say that I couldn’t see him too soon, as it would be too distressing for me (this bit I contend; quite sure my morbid, black imagination is way worse. Plus, it’s not about me!). By the time I was allowed in he said he had been asking for me for an hour (mind you, he also asked me where he was four times, so it might not have been that bad). To say that he was in a bad way is an understatement. We’ve been through recovery a dozen times or more, but this was by far his longest anaesthesia and most complex operation. He was confused, loving, thirsty, in pain and really quite bloody. I wasn’t even sure if he was coughing it up, spitting, or vomiting at times (they did say he would have swallowed a lot).
The surgeon was pleased with the result. He said the sinuses were even more infected than he had feared. He has now removed everything structurally inside that he can (in case you are wondering, this does not change his appearance at all, only his innards; imagine... in a few ops his nasal cavity has gone from Victorian cottage with cramped rooms, to an open plan house, and now been transformed into a huge barn conversion) meaning that this will be his last BIG sinus op.
The polyps will come back, that’s just shitty CF sinus disease, but with better access for medication, we can prevent them for much longer at least, and polyp removal is, in comparison to this, a walk in a very pretty park.
The morphine was fun (love the stuff!) but soon wore off. His saliva glands went on strike. Desperate, I suggested the gummy bear taste challenge just trying to get his mouth working again (he won). He was moved to a new ward. Shaky, pale, unable to walk or really eat still.
The suffering at times felt unbearable to watch, and yet, my boy? He never once complained and was polite to everyone.
Above all, we/he knows he needed this, to end that constant cycle of infection and the headaches, and so it’s such a relief to finally have it done. Thank you, our darling NHS. We thank you to all the stars, cheese moon and beyond! Part two to come (getting him home and far more antibiotics). Thank you for all the lovely messages x
