Well, today was a total washout really, certainly as far as Jamie is concerned. We drove the 2 hour journey as usual, in fact it was lovely because it was so hot we had the roof down on my car, makes it sound very posh, but it is over 13 years old and has done more than 190,000 miles. Still goes amazingly though!
Anyway I am digressing. When we arrived the manager met us at the door to tell us poor Jamie had had a sezure that morning. He was doing his normal morning routine and as usual really the seizure occurred as he was in the bath. This is often the pattern with his seizures. The staff are always really vigilant and carful at this time, and especially so on days like this when he has not slept at all well. Because Jamie adheres to his routines so strongly, if he sees us he wants us to take him out and nothing will stop him. After a seizure he is not well enough to move so we can’t even go to see him sleeping in case he wakes and sees us. It feels awful but we have to think of him.
Jamie’s seizures are horrible to watch, and although I find it really upsetting I’ll describe them so you can get a picture of what it is like. He starts to become a bit agitated and turns his head round to the right. (apparently this is a sign of a focal seizure that starts in the frontal lobe of the brain). He moves his legs and becomes really vacant and unresponsive, he is virtually unconscious by this stage. He needs to be supported as he just drops like a stone sometimes, and if he is in the bath he can never be left because he would just slip under the water and he is a dead weight during a seizure. While he is having the seizure he gasps for air and often his lips turn very blue because he cannot get enough oxygen into his body. I have over the years fought very hard to get him some portable oxygen which would help him, not during the seizure but help to re-oxygenate him when he comes round. Unfortunately no-one wants to know and they say it won’t help, I think this may be a cop-out because they do not want the expense – am I cynical? Probably but I have learnt this from looking after Jamie for 21 years.
Jamie’s seizures are termed tonic-clonic focal seizures (they used to be called grand-mal seizures). The focal bit comes from the fact that they begin somewhere in the frontal lobe. Of course if Jamie could tolerate a EEG (electroencephalogram), we could see more where activity in his brain was abnormal. They tried this in hospital after his first seizure. Jamie sat there very happily munching on crisps while they attached all the electrodes to his head. When they had finished and were just about to begin recording Jamie decided he had sat there long enough, ripped them all out and disappeared out of the room as fast as he could! I don’t think they’ll try that again very quickly!
Anyway, Jamie’s seizure lasts generally for an average of about 3-4 minutes, during which time he is jerking a lot and gasping for air. Quite a few have gone on longer – an ambulance is called if they last more than 5 minutes, although he generally comes out of it on his own. It is of course really distressing to watch and the only thing you can do is support him as best you can. When he comes out of it, Jamie is really fuzzy-headed, he is totally unfocused and can’t really function at all. He is often incontinent during a seizure and so he is cleaned up and changed before being helped to bed where he will sleep, sometimes for 6-7 hours.
So that is what it is like for Jamie when he has a seizure – not nice, not pleasant at all for him, and difficult for his loved ones and carers to cope with too. We know that seizures are dangerous, that a seizure could kill him. We have to live with this. I know personally of one lad who died from having a seizure during the night and I have fought very, very hard to make sure Jamie has the level of care he needs to make sure he is kept safe night and day. He has alarms and monitors, staff outside his flat at all times so he is probably as safe as can be.
Recently Jamie has started having clusters of seizures – he comes out of one, sleeps, wakes and goes straight into another. This leaves him absolutely washed out and drained of energy. He has sometimes had three big seizures in one day. Andy and I have often discussed why this should be like this. Although the seizures are still tonic-clonic, the first one is smaller than his usual ones. Does this mean that he doesn’t ‘discharge’ all the anormal electical activity in his brain? Does this leave traces of abnormal activity that trigger further seizures? I think I’ll research this further.
Back to Sunday – Andy and I still discussed Jamie on our way home again. We talked about how, when we come to take him out, he always takes his carer’s hand as he leaves his flat. Now I thought he wanted the carer to come with us to lunch, but Andy reckons he wants them out of his flat – it is his space and they have finished their job and don’t belong there anymore. I think I know who is right here (Andy) – it is just such typical behaviour from Jamie – I also get pushed out of the flat when we return from lunch. we no longer belong in his flat and his day has moved on to another section where we have no part. It seems very cold and clinical, but it is the one place where Jamie has his world, why should we not respect how he wants it to be?
I have learnt over the years never to expect the things from Jamie that we often want from our children. He hates cuddles and although he will put his head forward for a kiss sometimes it is not something he understands or even wants. But he shows how he loves us in extremely subtle ways – a look, taking your hand, a smile – that and having his head rubbed non-stop!!
So it was not a particularly good Sunday, but we are as philosophical as we can be – the bad comes with the good. Next week might be wonderful, who knows!