His lung function had dropped some 10-15% since his last test (January) and so he needs his fourth course of IV antibiotics in the last 8 months, his worst run yet. After the really shitty time he had in October last year, the plan was to switch from ‘IVs as required’ to ‘planned IVs every 12 weeks’.... only he hasn’t been well enough to last more than 8 weeks since then before needing more courses to help battle his infections. His doctor thinks this may be because he is still recovering from the October exacerbation and hopefully this will improve and we can start to stretch out the good bits inbetween over time.
That wasn’t the only bad news: The data from his nebuliser was downloaded in clinic, and disappointingly showed that while he is doing all his treatments, he is not always completing them. His ineb beeps when it’s finished and shows a smiley face screen; sounds straightforward to monitor, right? But as the duration varies depending on how well he is (how deeply he can breathe) and how much he focuses (the data showed that each neb was taking anything between 2 and 41 minutes, and he does six nebs a day) with noisy family life, trying to cook dinner, check homework and pick random bits of school uniform off the floor, we don’t always, 100%, definitely hear the beep ourselves, even if we’re in the room; we rely on Isaac being honest, only it seems he is not always.
; Cue some pretty emotional and honest conversations about his treatments, his health, and his future health. He has promised to do better, and I think he understood how serious this was. In the meantime, we’re reverting to old school ‘you sit in front of us until it’s done’ method. Cruel to be kind. It breaks my heart at times, we do so much to keep him well, but we need his buy in.
His liver ultrasound was also worrying (further results and bloods to follow) and demonstrating his physio in clinic today, he coughed up the biggest bit of sticky blood streaked sputum* I have ever seen..... CF truly sucks.
Anyway, there are no beds available on the ward, and there are no signs of the winter bugs abating. Our beloved NHS is cracking at the seams. This doesn’t sound ideal, but does mean I can administer his IVs at home, instead of spending two weeks on the ward. When he was younger we used to do more home IVs (I trained to do them when he was a toddler) but over the last few years they seem keen to do at least the first week in hospital, arguing that intensive physio will help. I get this, but also know that wards are rife with.... like, sick people (who knew?!) which is not ideal for him to be exposed to. That is no criticism about cleanliness on the ward, the cleaners are amazing, but there is no doubt that people cough all over the place, and we are using shared bathrooms, doors and communal food areas.
We’re confident that we can keep him active here, do the extra physio, avoid further bugs, and have a more normal family life, which helps us all and keeps him safe. He will continue with his personal trainer (three times a week) and can go to school, even with the needle in. Only missing the football. This will be my first time doing his IVs through his port rather than a long line, but his flush today went well, so I’m sure it will be fine. It just means being even more careful (sterile) than before, as the port is a permenant IV device and so close to his heart, infection in the line could prove fatal.
Plenty more results from todays tests still to come over the coming weeks, but for now we have a plan, and we will fight for every single percentage of lost lung function that we can. There was good news too, he is growing well, his dietician was very happy with his diet, and they have a new Clinical Trials nurse starting, and a joint venture with Cambridge University, which we hope will result in more access to clinical trials, which are hard to come by for his rare mutation (for my CF friends, he has two Class 1 mutations). Thanks for reading.
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*Blood in his sputum is a sign of lung inflammation, and not the same as hemoptysis, where you cough up fresh blood.
A muddy and knackered Isaac walking the dog. We are so lucky, these lakes are just minutes from where we live.
