Lots of things going on - most important, sons current health. We're now into the post chest infection, drug induced side effect rectification phase. Happens whenever he has a bad chest chest infection and has to use one of the more aggressive antibiotics. Grateful though I am to Dr. Alexander Fleming et al for antibiotics in general (he'd certainly not be here without them) - they are not an unmitigated blessing. The current one is quite corrosive and has resulted in a gastric bleed, (This has happened before, usually as a result of steroids.) so we're desperately altering his feed regime and stomache medication to stabilize things. Hopefully he'll get over this in a week or two and we'll have a period of reasonable health.
Life is complicated and painful for him and sometimes it gets me down not being able to take the pain away.
Meanwhile, we've put in a couple of formal 'yellow card' complaints about his feed system. One of which has resulted in a very apologetic 'complaints manager' speaking to us promising things will improve. I wait to be convinced. Talk on this is almost as cheap as the quality of their equipment. After some digging, I've managed (with a little insider help) to track down the NHS committee responsible for their contract and have had an approach made on the topic. It's time consuming and a hassle but money is what really impacts on them, so I'm 'following the cash'.
His official review stumbles on (one professional, in a public meeting, recently described the length of delay as 'obscene'). It doesn't seem to have made a difference though as both the key people from NHS and Social Services have declined to attend his annual operational care review as they're on holiday (where I used to work, if you couldn't attend at least you sent a substitute) - this obviously isn't high on their priorities.
It soon will be - I intend chasing this fairly vigorously in a week or so. I just hope they're rested from their holidays as they're going to be busy when they get back. (Holidays are not a luxury we, along with most carers and many disabled people, get.)
No apologies for sounding bitter - the care 'industry' has made me that way.