So here I am at almost 2am and Joshua is still refusing to fall asleep. I took him to bed around 10.30 as we were all dead on our feet after an afternoon at A&E. But immediately Joshua bounced up onto his knees, rather than lying flat, so I knew that we were in for a rocky ride. It has since then been a battle of wills involving me wrestling him down to the mattress and him reacting badly with his favourite hair pulling and pinching my arm. He finally slid out of the bottom of the bed to escape me about an hour ago.
So I made him some toast , in case he was hungry, then I have reached for the prescribed sedative, which surely, with him not having slept on Thursday night, it must work on top of Midazolam, his rescue medication. So I am now in the process of ignoring him and hoping that he gets bored and nods off. He does seem to have settled down, so my fingers are crossed. If he continues to be lively, I would say that I would like whatever he is having to keep him on the go, as I am flagging now.
We have agreed to review his respite provision in the morning, but from where I am sitting I am not optimistic that he will get there : Should he have a seizure in their care then they will call 999 and it will be back to A&E in another city. When he is sleep deprived, he is much more likely to have seizures so I am not sure how restful sending him away, late, might be. On the other hand, they are paid to stay awake and check on him throughout the night it could be our best chance of catching up on our lost sleep, topping ourselves up ready for the week ahead. Once again, it is a case of waiting to see…..