Monday, 24 August 2009

Wales 09 or Don't Hold Your Breath

When going on holiday what is the last thing you want to forget? Sun cream? Swimming costume? Wheelchair battery charger? Ah yes, another Deal holiday gets under way with its customary smoothness.

Fortunately the Paul Sartori Foundation who had the misfortune to be responsible for my homecare while we were in Wales are a superb group of people and managed to wangle a suitable charger from the very nice man who had undertaken to mend the electric bed and overhaul the hoist. Sophie at Paul Sartori must have wondered what terrible thing she had done in a previous life to have merited such severe punishment as having to organise the seemingly endless and complex list of requests phoned and emailed to her from London. The result, however, was a model of homecare provision with a succession of nurses arriving to sort me out morning and evening with good humour and skill. Their team was supplemented by 'No Problem' Greg who drove vast distances morning and night every single day to form the lynch-pin of my holiday care, and met every task asked of him with a cheerful “not a problem”.

The holiday passed with a mix of Welsh sunshine and showers but left us plenty of opportunities to enjoy the lovely local beach. The Pembrokeshire countryside is wonderful and we got to explore some places we had never been before. The boys particularly enjoyed the freedom afforded by a very safe environment and would disappear to play, armed with wooden swords, for hours on end with Alex from next door and other holidaying children. Ten days was not long enough so next year, Paul Sartori Foundation willing, we may try for longer.

A highlight of the holiday was our day spent at the Pembrokeshire County Show. This vast three day event takes over a local air-field and despite my wife's disparaging attitude of “why am I going to look at tractors?” turned out to be great fun. There were horse jumping competitions, dog agility trials and a truly breathtaking motorcycle display team who shot up ramps with such gravity defying acrobatic death-wish like grace both Polly and I wondered if their mothers knew what their sons did for a living. As one young man leapt some fifty feet in the air and casually let go of his bike, we both turned to our open-mouthed boys and said simultaneously “No!“ There were lots of rides and bouncy things for the boys to go on, including an army operated climbing wall which both of them gleefully scrambled up. As Sam abseiled down he banged his head on the tower and a whole platoon of battle hardened soldiers went “Ouch!“ (Sam was fine, his main concern was making sure we had all seen he had climbed as high as Matty.)

Of course, it wouldn't be a proper Deal holiday if all had gone smoothly. About a week into our stay the alarm on my BiPap ventilator began to go off with increasing regularity each night. Now the display on the BiPap is something akin to the tactical array on the USS Enterprise and it tells you such useful things as pressure, duration of breath, number of breaths per minute and whether your Phaser is set to stun. You can also turn off the alarm – for two minutes, after which, unless the problem is sorted, the piercing alarm goes off again. . and again. The display told us that there was a leak in the system but if there was we couldn't find it. The alarm began to go off at about 11 o'clock every so often, but by about 3 o'clock it was going off continually. Polly would get up to disarm it time and again but it always went off as soon as she crawled sleep deprived back to bed. It got so bad that Paul Sartori arranged for a night-nurse to stay over for the last night because they were concerned about Polly being safe to drive back to London. The nurse spent the night frantically stabbing at the alarm off button while I was dragged in and out of sleep. I was seriously thinking of taking the wretched machine down to the beach and throwing into a rock-pool. We rang the Brompton hospital but getting an engineer into the wilderness of west Wales is no easy matter especially when mobile phone reception is as variable and unreliable as a Libyan terrorists conviction. In the end we decided to leave it until we got home.

We stopped in Bristol to see my mum on the way home and didn't get back to Carshalton until gone 9 o'clock. That night Polly slept with the BiPap virtually tucked under her arm. Throughout the night the alarm went off time and again. The next day an emergency engineer drove a hundred miles to come and fix it. After prodding and poking it he checked the record detailing the machines history. “There must be some mistake,“ he told Polly. “It says here the alarm went off 582 times last night. That can't be right.“ Polly just laughed hysterically. Further prodding and poking revealed there was nothing wrong with the bloody thing. Which means the problem is not with the machine but with me. Sigh.

As far as I can gather in my sleep befuddled state the problem occurs when I am in deep sleep. Apparently my facial muscles must be relaxing and allowing the pressurised air to escape through my mouth. The BiPap thinks there is a leak and alerts us to the fact. The engineer has given us a different machine that does not have an alarm but unfortunately it is not as powerful as the old one so is only a temporary solution.

I sense that a trip to the Royal Brompton Hospital is on the cards.

Friday, 7 August 2009

Of Wales And Wonders

Well, we've had the new car for a week now and it remains unscratched and undented. Polly has discovered Sport on the gear stick and now uses it whenever there is a bend in the road or a hill, or indeed, a tree by the side of the road. She is still getting use to the football pitch length of the vehicle and we have had to massively cut back a bush to get it into our parking space.

We are off to Wales on Monday for two weeks so if you don't hear from me it is because I am in the land of my fathers and wireless broadband access is rarer than hens teeth. If I can post I will but the odds are against it. Talking of Wales, I would like to take this opportunity to thank the people at the Paul Sartori Foundation who have bent over backwards to make arrangements to organise care and equipment for our holiday. It must seem to them that accommodating the Deal's for a fortnight is more hassle than sorting out care needs in the rest of Pembrokeshire. I assure them we do appreciate the hard work.

Today a man from Possum came to fit a bracket to my wheelchair that can hold the Possum environmental control unit I have had for a while. This little grey box of electronic wizardry can operate all kinds of equipment, including the TV, the lamp, the back gate opener, and the front door intercom and opener. Up until now it has sat frustratingly just out of reach of me and the children have used it as one of the world's most expensive light-switches. Now it is attached to my chair. The only problem being, what with the already attached Neater Arm, my wheelchair is now the length of a pantecnicon. I have the turning circle of a bendy-bus and the chair is beginning to look more than a little Heath-Robinson. I am not safe to be out when there is even the merest hint of an electrical storm.

Right, I'm off to push random buttons on my gadgets to see if I can launch a nuclear strike.

Saturday, 1 August 2009

The New Car Cometh

Well the new car has arrived, diamond black and the length of a cruise ship. We were expecting it to arrive sometime on Thursday afternoon but the driver delivering it had set off from the Wirral at 4.00am and arrived at about a quarter to breakfast. This meant we were able to take the gleaming new vehicle out for a spin for lunch.

The Caddy has an automatic transmission but Polly has only ever driven a manual so our first drive was accompanied by little shrieks of panic as she tried to stamp on the missing clutch and pointlessly reach for the gear-stick. Within minutes though she was driving like a pro and we all began to relax. We picked up Pam, Polly's mum, and headed down the A3 to Painshill where we sat outside in the sunshine and had some lunch and Polly stopped shaking.

The Caddy is much longer than the old Kangoo so I feel as if I am sitting a long way back from the driver. Polly suggests that we put up a grill behind the rear passenger seats and I can bark and drool from my position in the back. The only thing I find truly annoying about our glorious new Deal-Mobile is that there is no way to play an Ipod or MP3 player through the car stereo which for a car design so new seems ridiculous to me. A trip to Halfords appears inevitable. On one of the many plus sides, having side doors to allow the children in and out without them clambering all over the fronts seats is such an improvement on the old van that I find myself wondering why we didn't take an acetylene torch and cut our own. We also have air-conditioning so in the height of summer it is marginally warmer in our car than outside.

My friend PJ has been reading me reviews of the Volkswagon Caddy Maxi which agree the vehicle is good value for money but point out that because it is a van conversion, we passengers are essentially the human equivalent of plumbing equipment or frozen pizza. Well, if nothing else, we are comfortable, air-conditioned, cargo. Other reviewers besmirch Caddy owners as being people whose fecundity outstrips their budget. Uncomfortably close to the truth in our case.

When I was a child it was my ultimate vehicular ambition to have a car with electric windows. At the time the only cars that had such sophistication were luxury cars like Rolls-Royce's and Bentley's. Now I can bellow down the length of the vehicle and Polly can push a button and miraculously windows slide effortlessly down. I feel like a shouty millionaire.

We can not thank my family enough for their immense generosity in enabling us to possess our diamond black, wheelchair accessible vehicle. I always knew letting my little brother beat me at Subuteo when I was 8 would pay off in the end. Thank you.