Hospital visit today, and again, we are reminded of how lucky we are to have our wonderful CF team and NHS. The children's wards are full already, RSV, noro virus, bronchiolitis, and this is all before any strike action is due to take place, or the flu season to really take off. The pressure is tangible. Over in Adults, the CF ward beds are also full, so we’ve kicked off home IVs yet again.
The good news:
- While it’s not great the wards are full, we are thankful to stay home
- While symptomatically he seems worse, his LF tests were not awful (happens sometimes, and vice versa)
- I successfully accessed the port myself, for the fourth time, and can now do this independently. This means that when our paediatric community nurses discharge us when he turns 18 (very soon) we won’t need to visit the hospital for his monthly port flush. I never thought I’d be so proud to be plunging an inch long needle down into my sons chest, but there you go
- Isaac mixed and administered the IV drugs today on the ward himself, for the second time. This means, for the first time in 17 years of doing all home IVs myself, we can now share the load. For now, I’ll mostly still do them for him (he’s exhausted enough from the coughing), but it’s a step towards independence. Doing IVs is a scary big responsibility; pushing drugs directly into the bloodstream - the risk of infection is high, but in this regard Isaac is very mature, and I’m so proud of him. Possibly others do this at a younger age? Or much older? Or never? I’m not sure. But for us, this feels right.
I’m back to being that flaky friend who has to cancel festive plans at the last minute, and I thank the patience of my friends, family and colleagues for their never ending understanding. It still sucks.
Isaac is sleeping a lot on this drug combination, but tolerating them otherwise. The fatigue seems to be catching, but I’m comfortably numb.
Big love to you all x
Cystic Fibrosis is a life limiting, genetic condition, affecting some 10,000 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.
