We are home from hospital. IV’s kicked off. Trying a new drug cocktail (Mero and Tobi).
Symptomatically, he seems worse. The cough is deep, rumbling, reverberating against his ribs. But lung function tests today were better than the last few days have been, which is both surprising and promising. The mucous is on the move, we hope. He has accepted that he needs this intervention, finally, which makes everything, calmer? As per his norm, he’s taking it all in his stride, and although the day was long, we had some giggles.
Due to bank holidays and staff shortages on the ward, it looks like he’ll be admitted for the latter part of the course, rather than the first week (which would usually happen) for some hardcore physio to help his battered and mucous filled lungs clear. He’s still hoping not to go in at all - but let’s see what the doctors think next week, and test results. Bloods and sputum in the lab now. For now, we treat the bacteria we know he has (PseudoA).
The house is once again set up like a hospital; drugs stacked everywhere, needles and syringes in boxes, glamorous yellow sharps bin on display. The best thing about home IVs (other than Isaac feeling well, of course) is packing them away at the end and appreciating having home as we know it back.
Happy to be home with a plan. Have a wonderful Easter break all x
Throw back photo of my sister and I. Thank you Jo, and all of our family, for your support at these busy times, especially with our gorgeous girls ❤️
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 (next of kin) of your wishes, as even when signed up, the decision becomes theirs after death. Thank you.
