It's Zack's big op day tomorrow. He is oblivious to it all. Meanwhile I can't stop thinking about it. I have even written a list of what to take with us, I mean how hard is it to remember a change of clothes and his food!!
We went to see Zack's consultant on Monday afternoon. I had a call from his secretary asking us to come in at 2pm. I met Dan at the hospital, he looked extremely worried. I asked him why he was so petrified, he looked like we were taking one of the cats to be put to sleep. He said he was terrified that the Doctor was going to tell us something awful about Zack, sometimes Dan gets himself wound up with too much thinking.
Zack's seizures are atypical, meaning he doesn't have West Syndrome, he is suffering with a form of epilepsy. If we don't get it under control it will get worse. He has been started on medication called Sodium Valproate. There is a list of side effects as long as your arm, but that is the case with a lot of medication. I think the main one is hair thinning, well in Zack's case, not much of a problem there.
We are to start on a small dose and increase it gradually over time. From looking into things, this may or may not work in getting his seizures under control. We will just have to wait and see. We have been asked if we can try and keep a diary of how many episodes he is having in a day. Great, this means Dan will become even more obsessed with counting the activity of the Pants.
Over the past day or so we have noticed an increase in the number of times the seizures are occurring, they are now happening in bursts of four or five, inter-spaced with 40 second intervals. So far today he has had 21, not good, but I am hoping the medicine will begin to work in a few weeks. Zack is also a little bit less alert than usual, again I am hoping this will subside and his alertness will increase.
Things are very tough at the moment, there is a lot going on and a lot for us all to deal with. I said to Dan the only way I can explain how I feel is that we are at the foot of a very big mountain and I haven't even got halfway up. I'm still at the bottom stood on a little ledge. I hope one day we'll be able to stand at the top and look at the sunrise.
If only we could just get a break or a glimmer of hope it would lift us a little. Hope is a very difficult concept to hang on to when you are faced with a daily serving of difficulties. It doesn't help when one of us gets down about things, we only really have each other for support. As nobody truly understands what our life is like we lean heavily on each other.
I think this week is just a difficult week and I am sure there will be many more to come. Hopefully next week will be better, I just pray every night that Zack makes some improvement, he deserves all the help he can get.