I’m not quite sure how to explain these last few weeks.
Ahead of planned sinus surgery, Isaac started IV antibiotics again. Partly because it helps protect his lungs from the stirring up of infections that surgery brings, and partly because his lungs were struggling a little more than usual. (I was sick on holiday, and Isaac caught the same after. Turned out to be the new strain of COVID - shitty little bug, wicked sore throat and evil headaches). He recovered well and surgery went ahead, which was a huge relief as the sinus headaches were worsening (ice packs and painkillers stage, but not quite the ‘under the duvet stage where the air is still’ kinda symptoms he has reached before). He asked me to film him in recovery for the first time (where Fentanyl should only ever be prescribed). We laughed a lot after the pain and he got to see for the first time the stage in recovery that he never remembers. For me, general anaesthesia never gets easier, holding his hand as his eyes go hauntingly vacant, but at his age, I’m thankful that he still wants me there.
It’s not for me, in a blog, to share the details of Isaac’s health, and all the details of how that impacts him. But I can explain, somewhat, how chronic illness affects us, our family, and me. Isaac is proud of the work that I do with the CF Trust, the fundraising and awareness, but there is, of course, a wordless agreement that we keep a lot to ourselves too.
A week after surgery, and a few days after we de-accessed his port following IVs, we had an emergency admission due to sudden collapse in the night. Thanks to his pup Remy, who woke Anouk upstairs, we found him and quickly called an ambulance.
We have yet to figure out why this happened, and Isaac himself remembers nothing. It was a confusing and terrifying time for us all. The paramedics and the many teams that we were cared for in A&E and in the days after were incredible. This included emergency doctors, his ENT team (who had performed the surgery a week before, in case it was related to that), a Neurology team (new to us), Cardiologists, and of course his CF and Diabetic nurses. He is still having tests, many of which have been reassuring. His bloods are confusing. Nothing new there.
We are accustomed to CF exacerbations; his symptoms tend to worsen over a period of days or weeks, or more quickly if he catches a virus. But it’s never been an emergency situation. Infection is our domain, our norm, and we know exactly what to look for. That could be a new infection, or a flare up of his existing bugs camped out in his lungs, or worse, something like a blood infection in his port line, or following a surgery. That we can look for, test for even. But this was entirely different, and I for one felt like the rug had been pulled out from under me left me in a crazy breathless free fall, the air from my lungs sucked out. A stark reminder of his time in ICU, I realised how much of that trauma and pain had been buried, both over time and in confusion. The pain and fear was so much worse than I even remembered.
Since then, he has been much more stable, and we remain hyper vigilant. Remy and Anouk have been hugged to death for their parts in finding him (it was 3am). We want to understand this, I feel like I need that, but may need to accept that it was a one off and we may never know why, while also being prepared for it to happen again.
In conclusion, CF still sucks, and curve balls can also be thrown in your face at any time, hard. Please consider organ donation, the waitlist is real.
Cystic Fibrosis is a life limiting, genetic condition, affecting some 11,000 people in the UK alone. CF sufferers often, as a last resort, need to trade in their damaged CF lungs for the lungs of a generous stranger. To sign up to support organ transplantation, please visit https://www.organdonation.nhs.uk/ and tell your loved ones of your wishes, as even when signed up, the decision becomes theirs after your death. Thank you.
