A weekend of trips out. We and/or his nurses have taken our son to one industrial visitor attraction, one sealife centre and a local carnival event and we're off today to a large bird sanctuary. The 'holiday' seems to be materializing. He's had mixed reactions, but not slept right through any of them. Seems to have got something out of things and health (apart from hay fever/asthma) is reasonable.
There is something the matter, as he's spiking the odd, slight temperature about once a day and the occasional extra bowel movement, but nothing specific we can put our fingers on. Checked out all the obvious things, chest, urine, boils etc. and his general demeanor is reasonable, just with these odd 'blips'. Just have to keep looking and get on with things. Even his sleep pattern isn't too bad just now - but something is niggling him and he can't tell us what.
Meanwhile, we're bracing ourselves for a major meeting with NHS over his care package this week where we should get an idea how they're intending to face us with his service review. No actual agenda - they just want to 'get their heads round his current care package' - that they've been part funding and part responsible for over the past 10 years. They attended his Social Services review, but as NHS have carefully not been paying their fair share, they seem to have managed to have very little record of his care and condition pulled together - despite his having x7 different consultants, many specialist health professionals involved etc. etc.. Part of me doesn't want to have this meeting and just let things drag on slowly, but without some resolution, we won't be able to get his nurses to help out 'off base' and a real holiday for him is out, his home nursing support is fragile and if (when) he's seriously ill again we'll be on our own again.
On the practical care front, we're still having problems with his gastrostomy (direct feeding via stomach wall) equipment. I'm fairly convinced the quality of the plastic has been reduced, resulting in repeated failures - with subsequent inflammation etc. but the dieticians insist it must be 'technique'. Given we and the nurses have been doing this for 10 years and the problem has only recently got worse, I find this hard to believe. Currently there's an uneasy standoff as dieticians have been moved/reorganized and our e-mails to them are 'bouncing'. NHS generally feels like it's in free fall from our perspective.
Anyway, off to see the wildlife. Put the issues to one side for a few hours.