Isaac is physically well right now. Chest sounds good, eating well, tummy not so great, but little nausea. But on week 11+5 having not left the house a single time, he is understandably frustrated, and that shows. He is 15, cooped up at home with me and his sisters 24/7. On his own terms, he wants to sleep all day, and play online with friends all night. On my terms, he needs to meet me half way... get up by noon, and share some kind of resemblance of a day with the rest of us - and get his treatments done at a time that I can properly supervise them.
We had CF clinic (by phone) again Thursday, and were told that for the first time, he could actually leave the house!! The data on people with CF having C19 is (quite unbelievably)..... positive. In one international study, 44 patients positive, none under 18, only one needed ICU care, and all survived - it’s way to early to speculate why this group (with already massively compromised lungs) might be doing so well, but ideas include; they are more closely monitored and will seek help sooner; that they are used to airway clearance techniques; that they are on antibiotics daily anyway, giving them some protection from secondary bacterial infections; genetic reasons; but also that people with CF are also - well.....mostly young.
On hearing that he could go out, his eyes widened with joy, until we repeated what his consultant had told us - he was only to go out with those is his household, and must not meet up with others. He is gutted. Seeing a group of his friends (or, friends of friends at least) down the river today, flaunting the rules, drinking beers, I didn’t feel annoyed, just kinda sad - Isaac’s options are so much more limited. Again. And again.
Isaac’s CF team also gave us the go ahead to ‘unshield’ the rest of the family, with extra care. This means that as well as Dan being back at work, Anouk (in Y6) will return to school in June. She will need to strip off clothes for me to wash when she gets in, and shower. She is a smart kid and she gets it.
We continue to have weekly priority slots at a supermarket which covers most of our needs (but 80 items a week, for a family of 5 is soon eaten up!) so family have kindly topped us up. Access to Isaacs medications has so far not been affected (but devastatingly, I know medical funding/research to find a treatment/cure for his mutation will have been upended by this pandemic too). We are hoping that we can avoid hospital until July - when he is due his first appointment to review his (possible) scoliosis. If we must go in for this (as it will require X-rays) we’ll hope to combine it with lung function at the same time - the one thing we cannot as yet monitor at home.
For all my restlessness and sharing Isaac’s frustrations (not to mention bearing the brunt of them) I appreciate how lucky we are x
Banksy and us.
