Decisions, decisions

Yesterday I had an appointment at the Royal Brompton Hospital which I had been getting stressed about. Not because of the appointment itself but because of the journey and uncertainty about parking etc. More on this later but the journey helped me make the first of two big decisions.


On Monday I tried a new car. It has the advantage of having it's wheelchair space in the front which would potentially be much more comfortable. I was hoping for either no improvement or the ride quality of a Bentley, making the decision on spending £25k easy either way. Of course it was neither but the improvement was significant and despite knowing the VW will only fetch £15k, I have ordered it. There was added pressure because if we wanted to avoid the 4 month delivery time we had to secure one of only two suitably spec'd cars in UK stock. The conversion still takes 4 weeks so I will hopefully have it mid March. The boys are mortified by the thought of being seen in a Fiat Doblo and I can't say I blame them. Five years ago I was looking forward to taking them for a spin in a TVR about now.

Okay, back to the hospital appointment. I was going to see a respiratory consultant with experience of tracheotomy procedure and ongoing care

I wanted to get more information on tracheotomy so I can make an informed choice when the time comes. I understood it can involve a lengthy hospital stay but I had heard anything between several days to a couple of months. Then 24 hour care is required at home. This is obviously the biggest consideration as this would require a full time carer. But my limited experience of NIV suggests I will need similar care arrangements as I unable to adjust the mask and if I start choking on saliva, I will need assistance. So I don't know if the care issue will be any different. I will try my NIV in a couple of weeks time once my physio has been trained to adjust the settings under guidance but I find it difficult to envisage using it overnight unattended. So it might not be a question of whether to have a tracheotomy but whether to have any ventilation assistance. With my FVC already below 40 it's a choice I might need to make quite soon. It's actually been fairly stable for 18 months after a steady decline during 2009 and 2010 but I have known of people where respiritory function worsened considerably without warning.

The consultant agreed with most of my points and reiterated the cost and carer requirements involved in 24 hour care. He likened it to flying an airliner; most of the time there isn't much to do but when something goes wrong, you need someone who knows what to do! I think it was a useful meeting but it hasn't made the decision any easier. The journey back got off to a bad start. As I drove the wheelchair into the car, it turned itself off and wouldn't turn back on. To make it worse, I was only half way in and in a position where the top of the boot opening prevented me lifting my head to operate the eyegaze and communicate with Tracy. I needed to explain how to switch the chair into manual mode so she could push it. A total catch 22 situation. Tracy had to hold my head as high as it could go and fortunately my eyes were just picked up by the camera and I could just about manage to type a few words explaining where the levers were. Tracy managed to push the heavy chair into the car. The journey back was horrible. With no power on the wheelchair I couldn't tilt it back so the slightest movement sent my head flopping forward and I spent most of the 45 minute journey home with my chin on my chest and my neck strained.


So my hospital visit helped me make the decision on the car but I still have a much bigger decision, the ultimate decision, to make. And if the non-invasive ventilation proves difficult without full-time care it is a decision I will need to make that much sooner. I really don't know what I should do. It's easy some days to think "OK I have had enough and if there was a button marked 'EXIT' I'd push it" but faced would I? Living with ventilation may not initially reduce my quality of life much further than it is already. But it is likely to impact other people more. The intrusiveness of full-time carers, the management of multiple carers when I can no longer do it. Does the benefit to me and my family of being on ventilation outweigh the burden. Non-invasive ventilation could extend life by 1 or 2 years and a tracheotomy considerably longer, at least theoretically. But is it fair to put everyone else's life on hold for the duration. This illness has already deprived the boys of a normal childhood. I know they haven't wanted for anything materialistically and maybe they have learned some things as a result of the situation, but on balance they have lost significantly more than they've gained. Is it fair to continue to subject them to this situation throughout their teens. What price will they pay just for me to see them grow up. If I choose not to vent then they will have to deal with bereavment sooner but they can move on afterwards. Is that going to be better for them and Tracy for whom all of this equally applies.

When the time comes to decide, will I be able to take others need into account anyway or will the self preservation instinct overwhelm every other consideration. Is it fair anyway to base the decision on others needs or at least doing it with their knowledge, or does it just burden them with guilt. Although I have focused in this blog on the impact of others, it's not an attempt to appear noble or selfless. It's because these are the only consequences that are fairly certain. I don't think I will know what I want from a selfish point of view until it happens and as I have already said, this might result in a decision that is far from being either noble or brave.
It's not a subject one can canvas opinion on. It's a decision only I can make and it makes the decision about buying a new car pale into insignificance.

.
.