We’ve kicked off another course of IV antibiotics, thankfully at home. No improvement yet, but his LF tests in hospital were better than a couple of days prior at home. Now we wait for sputum and blood lab results, and hope he’s on the right drug cocktail. We’re trying two new drugs, one of which is known for lots of side effects, but so far, so good. Six doses a day is keeping me on my toes, but Isaac also had his first training in mixing up and administering the IVs himself (if your wondering how this works, once his port is accessed in his chest, the line from the needle dangles down around 12inches (you can have shorter, or add extensions) which means he can easily reach, twist on the syringes, and push through drugs). He’s not close to doing this solo yet, but it’s a great start. I’ve always been happy to take the whole load, to take all the effort from him, as he has enough on his plate, but he needs to be able to move towards independence too. In my heart, I still hope that research will progress quickly enough, and a treatment might be on the cards that will treat the underlying cause of his disease (as CFTR modulators do for the majority of people with CF, with more common mutations). If that comes soon enough, hopefully his reliance on symptom treating antibiotics will lessen and he won’t need to. Love, live and hope x
A couple more from our eventful holiday (which we are being (partly) compensated for!)
