The Dreaded Ventilation is Nigh

blog entries have been very thin on the ground although plenty has been happening, so here is a quick roundup of the last few weeks.

At the beginning of April we had a night away at the New Forest hotel that we first visited in November. This time the experience was different in several respects, both better and worse. On the positive side, November's bitterly cold weather and icy winds which kept us inside the hotel last year were replaced with wall to wall sunshine and warmth. On the day we arrived we stopped at Bucklers Hard a few miles away and spent a couple of hours there before spending the remainder of the day in the hotel grounds.

On the negative side I found the journey down very tiring and combined with the effort required to operate the wheelchair at Bucklers Hard, I was exhausted by the time we reached the hotel and remained so for the rest of the day. Next was the thing I had been worrying about, the transfer to bed and sleeping (or rather the inability to sleep). The hoist we had hired had been delivered and worked ok, but despite taking my own pillow I was having problems after a couple of hours.

I had already had breathing problems sleeping on my back at home but I had made some modifications allowing me to turn on my side. The bed at the hotel didn't allow me to move so I was struggling for breath. Tracy pushed me on to my side but after a while my shoulder was hurting and one hand was trapped under me. I had to decide whether to stay in that position or go back on my back and risk the breathing issue again. Then the other problem was the heavy cotton duvet. I needed it low enough so the weight of it didn't pin me to the bed or add further weight on my chest. But it had now slipped too low and my legs weren't strong enough to fish it back. I hardly got any sleep and the time I had to think just made me worry about the cruise; this was 1 night, a 90 minute drive from home, the cruise is 14 nights away from home.

Since getting home I have continued having problems overnight and also in my indoor wheelchair which applies pressure to the area of my back in just the wrong place. As a result of all this, I have arranged an appointment with a respiritory consultant next week to arrange ventilation equipment. I have dreaded reaching this stage but I think it would be unwise to embark on the cruise without it. Although this non invasive ventilation is simpler than a full tracheotomy, it still requires a lot of initial setting up and requires a mask over mouth and nose, which by most accounts is fairly uncomfortable and hardly conducive for sleep, particularly as I will be incapable of adjusting it myself. Some people decide to draw the line at assisted ventilation but I guess I should at least try it first.

I realise I have strayed from the original subject of this post but it seemed to be a good opportunity to elaborate on this development.

The hotel break was a nice change of scene and it was good of Tracy to undertake it, but I fear it will be the last one we do.

I will leave other recent activities for the next post

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