When I explained to the kind but slightly ineffective lady in admissions that he has constant headaches and nausea, is off school a lot because of this, that he also has CF, and that his infected sinuses cause issues in his already infected lungs, she struggled to reply (I was very polite, I always am, I get that this is a strained NHS, and that they do their very best), the only reassurance she could offer was that she would schedule a reminder for herself to check with the doctors again in TWO WEEKS. We cannot sit back and wait that long while he suffers this much. He has days where he walks round with either an ice pack or a hot flannel on his head all day, despite 24/7 pain relief.
So I reluctantly called PALS and explained the situation. Within 24 hours, we had a surgery date two weeks from now.
It’s so sad that we have to do this, yet again - we had the same with his last sinus surgery; after months of waiting our CF consultant actually advised us to complain through PALS to have him bumped up the list, as it was the only thing that would work. It seems being under the care of different teams creates a breakdown in care for the individual (at times Isaac has been under the care of both his CF Team (which includes his Doctors, Specialist nurses, Dietician, Physiotherapy, Psychology and Pharmacy as standard) but also Gastro, ENT and Immunology, and it feels like all these teams see only the aspect that they treat, without looking at him holistically; it doesn’t take a brain surgeon to get that blocked and infected sinuses will further hinder someone with lung disease, right? PALS help see the bigger picture across all of an individuals needs and prioritise appropriately. At least I hope that’s what it is, because otherwise it’s just about ‘he who shouts loudest’ and that would be sad too. Anyway, we have the date.
A few days before surgery, he is also having his annual review (his full CF MOT; chest X-ray, bloods, bones density scan, ultrasound, full suite of lung function tests, diabetes test, dietician, physio, psychology, CF nurse and doctor reviews, all in a single day) and since he is coughing significantly more each day, a likely action plan will be to have two weeks of IVs post surgery.
But our worry is twofold; one that his lungs will need these IVs sooner - which could delay surgery, and two that because he is having surgery and his chest sounds so shitty that they will admit him to the ward, rather than allow home IVs. Corona* fears aside, the hospital is already amidst a flu outbreak, and we would much rather keep him safe at home. Plus, you know, being in hospital kind of sucks.
*Despite the very small rate of Corona infection rates here in the U.K, they are predicting that this could still unfold into a full epidemic here, and if that happens, up to 50% of people may be affected. Stay safe people! x
Above, pictures of Rosa bean (her, a willing model and me, playing about with my camera).
Below, little Isey. This was us festivaling it up, almost ten years ago. He will turn 15 very soon. How can that even be? ❤️
