As you know we are in hospital for Samuel to start the Ketogenic Diet. I wrote in a previous blog post, Tricky Customer, that I was mainly nervous about the doctors and nurses and their approach to Samuel’s epilepsy.
I’m all too aware that Samuel has unusual epilepsy and that you don’t medicate all his seizure activity (because that would mean you’d be sedating him every single day when he does usually come out of the seizure by himself). But nurses and doctors are trained to resolve seizure activity as soon as possible.
To add to it all, Samuel didn’t have a great start to the week. We came into hospital on Monday and that evening we gave him Midazolam. But we, as in his Dad and I, decided to give it to him. He also had another dose on Wednesday which was given under my instruction.
And that’s been the theme for this week. Everyone has been told to follow our lead and it is up to us to decide when to give the emergency medication. In fact we’ve been pretty much left to it. I’m doing everything for Samuel as I normally do, doing all his medicines and feed plus managing his seizures. They’ve not even taken his medicines from us, they are here in the room with us for me to use when we need to.
The nurses are lovely as usual and very interested in Samuel and I’ve told them all about him. They notice his twitches and jerks and I explain that they are normal for Samuel and they tell him that he’s a brave boy and stroke his hair.
Being honest I think some of the nurses are relieved they don’t have to make any judgement calls and it can all be left up to Mum. I don’t mind. I don’t mind at all. It’s my job after all and although I might not be trained or be able to do lots of complicated nursing and medical stuff, I’m the best nurse Samuel will ever have.