Went into the school yesterday as the teacher at Kestrel House had called to see how Jack is.
They seem quite traumatised by Jack's first week and a bit at school and I can't really blame them. I feel a bit like that myself.
However, having seen Jack go through far far worse with his seizures it's quite hard for me to get across to them that this is nothing compared to what it could be. At one time Jack was having up to 100 seizures a day and when they were under control, went down to about 30 daily. Now finally we have the best control: an average of 6-10 seizures a day. Most of these are tonic clonic seizures and involve all of his body. What makes it harder is that Jack's seizures vary a lot and it's rare to have 2 exactly the same!
I gave them a bit of a background on how it used to be and explained that although 16 minute seizures are not good, it is not the worst it could be. As long as they follow the protocol to the letter then they are doing all the right things. This is the point where I broke down cos it is hard to reassure people that as long as they follow the protocol, what will be will be. I know that Jack is high risk for SUDEP (sudden unexpected death in epilepsy) but I hope that I don't have to face anything like that for a long long time. Just writing this makes me want to cry.
For those of you who don't know what a protocol is, it is a set of written instructions for school/respite/home care to administer rescue medication for seizures/ feeding regimes and giving other medication. A school doctor usually writes them up and they are reviewed each year. This makes sure that everyone who works with your child carries out these tasks in the same way.
Even with this in place there is a lot of trust involved. I have to trust that they will do everything possible to keep Jack safe and they have to trust that I will be there for them, supporting their efforts and available to reassure them whenever possible. I know it is a huge responsibility, I wear that badge every day and I know how daunting it is.
Hopefully the worst is over for a week or two. Jack hasn't had another big fit since Wednesday afternoon but he is pretty out of it and drugged to the eyeballs! If he still hasn't had a big fit by tomorrow then he will get home and then I will have my heart in my mouth for a couple of days til I get used to not having the support of the hospital.
I will quickly be too busy to worry I'm sure cos Jack makes me work my butt off. Typical man!