Sleeping Beauty part 2

Just yesterday I explained that Joshua was enjoying nights of 15 hours’ sleep and that I wished it could be banked for the future. Little did I realise that he would need to dip into that sleep account so soon: Yesterday Joshua had three seizures – one at 3.30am in bed, another at 11am and the last at 8pm in the bath when his head dived towards the water with alarming speed and strength. He did not recover as he should have done, and continued trembling and staring, so that I had to administer his emergency medication less than an hour later.

His midazolam should send him to sleep and break the cycle of his seizure, but last night Joshua was unsettled and awake all night long. I think we had an hour’s sleep between 1.30 and 2.30 – well I did , I am not sure about him! He kept asking for ‘dinner’ so through the night he enjoyed toast, rice krispies and hot weetabix, all in an attempt to settle him down.

Joshua has his head on a cushion this morning, I cannot see if his eyes are closed but I think it is safe to say that he will not be very lively today. It is the unpredicatbility of Joshua’s sleep patterns that are difficult to manage as it is feast (15hours) or famine at the moment. He cannot be left alone when he is awake as he cannot keep himself safe and it is impossible to say when the next seizure will strike.

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