CT scan done. The doctor said it was as he expected (since he’s already poked a camera up there anyway). Our CF nurse gave a less guarded review ‘looks ghastly, no wonder he’s feeling so bad’.
The follow up which was to be a month later, I had moved to 3 days later (happy kick arse Mama moment), and the ENT team have been great, seeing him for pre-op the very next day, so we are all set for surgery, just waiting for the date now (we will keep the pressure on).
His CF team will liaise with ENT, as while he is under anaesthetic they will do a lavage (hoover up some sputum from his lungs, to test in the lab), and depending on lung function test results, he will likely start a course of IV antibiotics at the same time. He is coughing more each day, and his last course was in late November, so the timing is no great surprise. He will need two weeks off post-op due to infection risks anyway, so tying in IVs to this time off school is no bad thing.
Our hope now is that the op comes first, and the IVs second. If he becomes any less well, and needs IVs sooner, that could mean he wouldn’t be well enough for surgery, but at the same time, the sinus pain/infections continue to impact his lungs too. Bit chicken and egg that.
Our beautiful, spirited, Rosa bean.
In typical Isaac style, he is taking it all in his stride. He is not able to exercise much; he is in pain and sick often; he is missing a lot of school - but he still laughs with us everyday. We got his school report, and despite his low attendance (about 80%, so a day a week on average.... and shall we say, a rather lack lustre attitude to homework in general) he is still doing well. I don’t know how he does it.
In other news, myself and some very good friends are beginning to plan our next big fundraiser... so excited about this! No trekking, hair shaving or throwing ourselves out of planes this time... but an EVENT. More details to follow.
Best of all, the CF community is awash with incredible stories about how Trikafta (the third generation of these new *small molecule drugs) is having such a crazy positive impact in the quality of lives of the 90% of CF sufferers for whom this will work.... in some cases, it’s mind blowing (e.g. being listed for a lung transplant due to end stage CF, to coming off the waiting list entirely with a 20% increase in lung function - in a matter of weeks!). Many happy tears hearing all of this news, but with it, I’m reminded of all those we have already lost, for whom this comes too late. I can’t help wondering, if it could have come in time for Jayne, would she still be here? For those most recently lost, this seems all the more cruel. In some countries, these new drugs had been developed, even manufactured, but they sat unlicensed in pharmacy warehouses due to cost and frustratingly slow negotiations and process. This must end. Trikafta needs to be made available in the UK now, before more lives are lost. Please sign the petition here.
Have a lovely weekend all x
*I am asked about these new developments often, so just to reiterate, the current drugs that are licensed will not work for Isaac who is in that last 10% who have a class of mutation where the protein cannot be fixed (as it can be for the majority) as in his case, the protein is never formed in the first place, so we need a whole different approach. But it brings us a lot of hope too.
Bassin de lumieres ❤️ (need to go):
