It was touch and go for being admitted. Something I had not pre-warned Isaac about because I knew I’d struggle to get him into clinic at all if he knew (he is currently adamant that he will not stay in hospital). Right now, the wards are riddled with COVID, but also normally winter bugs, such as norovirus, which they think have come early due to the pandemic and us staying home more. It’s odd. These bugs are relentlessly cunning.
For us, this means limited beds - so a reprieve for now. They would also much rather him be safe and home than on the ward. However, we can only stay home if he a) responds to the drugs, and b) adheres to his physio routine, which he struggles with when he feels so crappy.
We kicked off his usual menu of Ceftaz and Tobi with a side of NAC. Bloods results due in the next couple of days will say if he needs an anti-fungal kicker too. This is his first home IVs in months, which is amazing for Isaac, so we shall not complain. Still, summer timing is always frustrating (not that we had holiday plans).
Lovely chat with our much loved CF nurse while the drugs were infusing. She said when Kaftrio was finally licensed for use in the U.K., she was tasked with going through the list of patients that they had, to see who would be eligible. When they realised that Isaac was in the 10% minority that this drug would NOT work for, the team were all gutted (being one of the less well on their list). I know they all care, but hearing this bought a tear to my eye.
Yet again, they managed to get us in to clinic at 24 hours notice, and safely home with two weeks of drugs within hours. Love our team.
Keep well out there x
(oh, and did I tell you that his port is bleeding back again, after 18 months of not doing so? Some good news, which my CF friends will understand - a few less stabs!).
Getting the IV station up and running again. I would pay good money to see them reduce packaging and to provide Tobi in 8ml vials!
