Up until a couple of days ago, I could say that was Isaac was doing really well, for which we are super grateful. Hopefully the last couple of days is a blip he will get over quickly (we’re waiting on lab results to see what he is growing on his chest), if not, he will be reviewed in clinic. I don’t sleep so well when he coughs all night (the worry, rather than the noise, as I usually sleep like a baby stone) but he never complains (that boy ❤️).
A huge wish of mine was that he would have a good long summer, following the end of school and his (not actually taking) GCSE’s. We await his teacher assessment grades in August. In September, he starts a course for Carpentry and Joinery, following his Dads footsteps into a trade. Not necessarily a career best suited to someone with a lung condition, but his choice, and I know he will excel in this.
He has had numerous appointments lately, and one outcome was our almost discharge from scoliosis clinic. He has a curvature of his spine which has worsened over his teenage years as he has grown (not necessarily CF related, but may be) but it is mild (14 degrees - only at 40 would they consider surgery). As it is, he will hopefully never notice it, but if he has another growth spurt (not likely now, at 16 and a half) it could become worse, so they will see him one last time before discharging him at 18.
We’ve also had emotional discussions with our CF team about his impending transition to adult care. This is a team who we have been with throughout. Some of whom have been with us from the very start. They have been witness to us at our very lowest, and sometimes, our most jubilant. Most importantly, they have been there for us always, only a call or email away. I cannot tell you how much we appreciate and adore our team, in particular our longest serving specialist CF nurse, Caroline, whose calm presence has in no small way saved me a million times. We all talk about how our NHS go above and beyond, but Isaac and I witness and personally benefit from this on a very regular basis. We are humbled and beyond grateful, and will pay our thanks to them all before we leave.
It might not sound like much, since our Adult care team (The lush new Royal Papworth) is now on site with Addenbrookes, so we’re still heading to the same location, but this is an immense change for us. Isaac is now too old for a paediatric ward, so until we can get into Papworth (there is a bit of a backlog due to COVID) he is at risk of being admitted to a general adult ward should he get ill. When we do get to Papworth, the rules are all different (as I understand them, but my knowledge is limited, as due to the pandemic we have had limited transition clinics). I’ll no longer be able to stay with him on the ward (and have never left him before); He doesn’t have to invite me into clinic appointments; I am no longer consulted, or necessarily informed; Critically, they operate a different policy on home IVs. Right now, when Isaac is well enough but still needs IVs, we do the first dose in clinic (in case of a reaction to the drugs) and then I administer the two week course at home and de-access his port myself. The only help we have is the community nurses coming three times during the course for abx blood levels. Of course we are admitted when he is more unwell or if he needs extra tests or treatment, but this home IV regime, when we can, is massively beneficial to us all. He gets to sleep and recover in his own bed, go to school, see friends, and be with his family. In adult care, from what we hear, they keep you in as standard for the first week of IVs, and only allow home IVs for the second. Considering at his worst, Isaac had 10 courses of IVs in a single year, this could be massive for us.
Both Rosa and Anouk have been isolating lately, due to positive cases in their school classes. Frustrating now we head into school holidays, but it is what it is, and for the sake of others, we follow the rules. Dan, Isaac and I are all now double vaxxed, and thankful.
Love, love, love ❤️
The red balloon. 1956.
