Is rebel the right word? No, he is not actively NOT doing treatments; It’s the INACTIVITY in which he does all the treatments that he ACTIVELY needs to do. He says he just doesn’t care. I reply that I can’t stop caring. Mostly we reach a compromise, but often, after a teary standoff.
Each day, I set out his days worth of physio tools, tablets, inhalers, nasal sprays and nebulisers. I can say with confidence that on the most part, he begins each of these treatments. Not always on time (e.g. some doses should be 12 hours apart, but when you sleep most of the day, it’s difficult to get the timing right). But he does them. But NOT with the motivation that they require; physio requires him to actively breathe through a tool, huff at intervals, and spit out sputum. When he argues that he’s done everything that has been set out for him, it’s very hard to kind of agree, but then argue that he need to do them BETTER.
How can I prove or argue that he’s not taking the nebulised drugs deep enough into his lungs to kill the bugs that have colonised in his lungs? When I can’t see that? How can he prove that he’s doing blows with physio with the gusto they need to help shift the infected mucous in his lungs, when he isn’t always able to cough it up anyway? It’s all subjective. Only my love, is obsessive.
He is facing likely sinus surgery again soon, for the third time. And this time it will likely be a bigger operation than the last two. This is probably inevitable, but not doing the recommended sinus rinses won’t have helped (he refuses these most of the time). Today, Anouk helped me fill his weekly tablet folder, she likes to do this to help me, while Isaac never has. I asked her how she thought life would be, if it were her, rather than him. Her simple reply was ‘I would do everything to stay well’. But the point is, we will never know. These are his shoes. How could we ever know how we would be, wearing them?
I’m not coping super well with semi-lockdown life right now. Too much time to think. To worry. In a funk. I miss people too much. So bad. Too much time at home, and for Isaac and I, a fair proportion of that time is made up with asking him, pleading with him, to do his treatments. Being able to test his lung function at home, for the first time, is incredible. The fact that in the last six months, we have visited the hospital just twice; unprecedented! We feel safe with the amount of monitoring he has, and reassured by the access to his team that we are always subject to. We can sleep longer, without the need to be out of the house by a certain time (mornings are always the hardest part of his day). We laugh, we dance, we see friends (on a limited basis) when we can. So why does this feel so hard?
Next summer, he will transition to adult care, at the Royal Papworth Hospital, and then, more than ever, the emphasis will be on him. HIS wanting and needing to stay well. Is he ready for that? He has no idea what he wants to do after GCSE’s. Does he have any idea of how active he will be in keeping himself well? Am I ready for that? After 16 years of his health being my priority? Watching him take the reins, and make his own treatment choices?
We’re returning to face to face clinic this week and next (CF and ENT). I suspect this might be short-lived, once we hit another peak. But for now, we’ll take it - we think he’s doing OK, but a face to face chat from the professionals might help him take things a bit more seriously. As a parent, it sucks to be the messenger of endless rules, bad news and health woes, when really we’d rather spend the time just lovin him.
My plan is to complete my port-access training now, so we can avoid hospital more, and help the community nurses out, who currently come monthly to flush his port for us. It is one thing to administer the IV drugs through his port at home, and even to remove the needle following the two/three week course on antibiotics (which I have been doing for years now), but it is something else to use your fingers to anchor an invisible lump below skin, and plunge an inch long needle into a very small, scar covered spot on your sons chest, hoping you make it in first time... EEK! Wish me luck.
Keep safe people x
Summer by the river, and random tile love ❤️
