Fits and starts

Joshua woke up lively yesterday and came downstairs at 6.45, with no apparent side effects from his seizures or his  dose of rescue medication, much to my relief. He was pleased to see me and Yorkshire Grandma and was full of beans, so he had breakfast as usual and I got him dressed for school. Although I sent him off for school, with a note in his diary to explain what had gone on, I still had an uneasy sense of anxiety all day at work that I may be called by school at any moment to hear about more seizure activity. I jumped each time the phone rang and I was never far from my mobile, just in case they needed me to leap in my car.

The worst calls that we have had in the past are when the emergency medication has been given,but when it has not worked and so an ambulance has been called. That is a terrifying call to receive and on several occasions we have had to meet Joshua already at A&E and then, even through his post-seizure, drugged-up state, the relief on his face to see us,his parents among a sea of strangers’ faces, is visible. That must be a bewildering time anyway, coming round from a daze, to find yourself in a hospital bed, would be terrifying. The trouble is that at A&E, the doctors do not know Joshua or his epilepsy, and so they are working blind. In trying to establish if he has recovered sufficiently well to discharge him, the medical staff ask him questions that he could not answer on a good day, let alone post-seizure. In the end, they tend to ask us, as his parents, if he has returned to normal, normal for Joshua that is.

This will be yet another thing that will change after March, he will be classed as an adult and so will no longer go to the relatively pleasant environment of Children’s A&E, he will have to fight his corner with other adults. I was told that once he was 18, there would be no provision to  stay overnight with Joshua in hospital, should he be admitted onto a ward. I will have to fight that battle if it comes to it, but even as an adult, Joshua would need a chaperone , someone with him to be his voice and someone there to keep him safe too. I suspect the nurses would be begging us to stay with him to try to keep him in bed, to reassure him and to take care of his needs. Joshua would not be the first adult with learning disabilities to require a hospital bed, so there must be precedents.

But thankfully, on this occasion, the emergency medication did its job and there was no re occurrence of the night before’s seizures and he has promised me that he will also try to keep them at bay this weekend while he is away, in respite.

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