Out of the frying pan - into the warming oven

Last week or two has been a definite improvement on previous few months. Sons chest infection seems to have cleared, and even better, we've had his sister visiting for a week or so over Easter.

We still have problems with his breathing etc. - they're a bit different now we're getting into the hay fever season - but he's not continuously in distress. One we hadn't seen before looked suspiciously like a 'panic attack' - hyperventilating and very high pulse rate. We used all the treatments for asthma, including oxygen, panadol etc., even 'paper bagged' him briefly but what seemed to work was slowly talking him down. Difficult to pin down though - it could have been the treatments kicking in. Not being able to tell you what's going on is a real problem and educated guesswork is all you've got to go on.

He's had his 3 monthly botox to ease his hand and wrist contractions - really works. His nails used to cut into his palms and cleaning them properly was all but impossible. These days they're much more relaxed and we can get rid of the 'cheesy' smell. (This is what comfort and dignity is really about.)

Meanwhile in the background, the cuts rumble on. Three meeting last week and not looking forward to the upcoming one with the PCT over reviewing his care package. We're going to have to take on responsibility for employing nurses etc. for part of his care as no one else will under the new CQC registrations - getting that funded while stopping them reducing his care package should be 'interesting'.

In the end, however well meaning the care provider, it comes down to relatives and carers to fight his corner. I really worry for the ones who don't have family or aren't articulate and stroppy enough to make providers/funders do what's needed. I know some of them. We do what we can to help but we simply don't have the energy to fight everyone's battles. I think he'll be all right if he outlives us - his sister can be just as determined as we are, but I don't want him taking over her life as well. They both have a right to an independent life.

So, maybe this time of panic over his health is easing and it's back to the war of attrition. It's not a war we look like winning - not being forced back too far is as good as the vision gets just now.

Credit where it's due

I've been pleasantly surprised this week by some unexpected progress on our sons multiple broken chairs.

A man in a van, from wheelchair services arrived unannounced to fix his wheelchair footrest - it's been replaced with a second hand one from a wheelchair no longer needed. It isn't perfect but it's a lot better than it was, and it will get him through to the proper replacement being re-assessed etc.
Thank you.

Another man in a different van, also rang us up to see if we were around so that he could alter his postural support/drainage chair - for this we dropped everything and made ourselves available. He did the alterations his previous boss had assured us were impossible in about an hour. There may now be another problem with the chair due to the alteration, but it works and he's comfortable in it.
Thank you.

His toilet chair simply needs a replacement part for the broken bit.
It is still broken.

Two out of three isn't too bad.

The problem with chairs

I'd never have thought sitting down could be such a problem. But it is. Our son has a number of chairs - a wheelchair for sitting in and moving around in, a postural seat that doubles as a 'comfy' chair and a 'standing frame' for chest drainage and a toilet seat - you can work that one out yourself. And all three are either problematic or broken at the moment.

His wheelchair footrest (non standard chair) has obviously been driven into something hard and got badly twisted. We've had maintenance out twice, who hit it with various sizes of hammer but it's still too bent to support his feet properly. So we now have to get the manufacturers out to 'assess it' - but not until after the next wheelchair clinic (not sure when that is yet), after which there will be a delay while someone finds a budget to get it mended out of, and eventually it will get fixed. It's been damaged for about a month so far and looks like another month or two before it gets mended. This is normal.

His postural chair has never been quite right as it's too tall for his chest drainage position. It's taken about a year and various 'bodges' and 'adjustments but the manufacturer has just agreed it can be altered without invalidating it's 'integrity'. The engineer has therefore cut 4 inches off the frame and it now works. I wanted to do exactly this myself, at no cost to anyone a year ago, but that isn't allowed. This also is normal.

His toilet chair was a more entertaining problem. The bracket holding the 'pot' had broken. It still worked if you put the pot on the floor, carefully positioned for a 'long drop'. The menders turned up last week and fitted a velcro strap to footrest - no idea why, bracket is still broken. Bemused and cross phone call later and they should be coming back to do the right mend some time soon - we hope. Normal service has been resumed.

All I want is for my son to be able to sit down normally in something that isn't broken.

One day I'll tell you the saga of the gastrostomy feed system.

Saving energy

Chest infections clearing - hopefully, after some problems. Residual bits causing discomfort but not too much distress. Priorities now are to make sure his chest stays clear, he's kept as comfortable as we can and he gradually gets back to 'normal' (whatever that is.) doing things.

Last few weeks have been a fairly continuous round of physio, antibiotics and worry. Some of the time he's been with us - so we got to worry at first hand, but doing his care at least kept us occupied and feeling we were doing something positive. The hardest parts were when he weasn't here with us. Someone else was doing the care. We stayed with him as much as possible but had to come home at some points to eat and sleep. Being on the end of a telephone isn't the same and we ended up calling and texting for updates at what must have seemed to his nurses, unnecessarily frequent intervals. It isn't that we don't trust them, it's just that he's our son, and when you can't sleep at three in the morning, a bit of reassurance is more effective than any amount of temazipam.

Back in the looking glass world of service cuts, our council has just withdrawn funding from all the local CVS projects to save money, so all the carers initiatives (support for young carers, elderly carers, carers networks, learning disability advocacy, communication help for non verbal people, volunteers etc.) will stop in June as CVS is forced to close down. I thought carers and things like CVS were The Big Society -apparently not. The effects havn't hit us yet - we'll cope with the fall out when it does.

Right now I'm just tired but hopeful that his health picks up. Campigning will have to wait until normal (or abnormally high) energy levels are restored.

Care - both sides of the looking glass

Things are a bit better. Heavier antibiotics gradually clearing chest, beginnings of side effects. Thrush (manillia - fungal infection) is fairly inevitable in a number of locations on this level of treatment, treating topically at present but will move to systemic treatment once antibiotic course over. Bowels disrupted - started loose, how getting constipated (again this is usual - but needs dealing with as discomfort can cause more fits). Antibiotics interacting with anti epileptics anticipated any day now - more fits. This is the usual aftermath of a severe chest infection. Bigger issue just now is his exhaustion and deep (almost comatose) sleeping which brings very shallow breathing, sleep apnoeia and sudden drops in O2 saturations as movement of infection/secretions gets moved about. Life gets complicated sometimes.

Re-reading this, it doesn't sound very good, but it's what you come to live with. Hopefully he'll be better in a week or two and back to what passes for normal in our world.

Meanwhile, I tore myself away for a few hours to attend a carers meeting. Where we were told -

• the service cuts are inevitable as the council has no money - by our cabinet councillor
• the health service is in disarray locally and no one is sure who's responsible for what - by the PCT
• all's well with care regulation, except they aren't concerned their changes have lost us a service, they don't regulate day care at all and they'd like to inspect all care providers but they don't have the staff - by CQC (Care Quality Commission)

I went out tired and came back depressed (not clinically - can't afford that.)

At least helping with his care is doing something positive.