Fitting In

Joshua had a bad day for seizures yesterday : his day began at 4.30 am when he came downstairs pale and clammy, indicating that he had probably suffered with seizures in bed, perhaps that is what woke him up. He stayed awake until 6.30 when he grabbed an extra hour of sleep, but he was very reluctant to get dressed for school. But once dressed, Joshua was happy enough and he was pleased to see the taxi driver and escort. He was eager to set off as he shut the car door in my face, while I was trying to kiss him goodbye, perhaps he was bored of listening to us talking.

I had a call from the school nurse as I was on my way back to work, after my lunch hour. He was having very short seizures that lasted about three seconds, but unusually he was coming out of them fully in between, responding and talking, then some time later would have another. We discussed the use of his rescue medication but rejected it as it was not in the normal pattern for him. Gradually the gaps between them lengthened , until the seizures stopped. It was at that point that I should have offered to go and pick him up, rather than allowing the taxi to retrieve him. But they told me that he was happy and I had work to do, so I did not offer. but hindsight is a wonderful thing. It always feels like a big responsibility to make a judgement remotely as you are totally reliant on the information that you are told, whereas when I can see Joshua for myself, I instinctively know what is the best thing to do.

An hour later the passenger assistant in his taxi called me to say that, similar to last week, they were taking Joshua back to school as he had already had three seizures. The taxi does not carry Midazolam yet – though there is a plan that they will – and they are not trained to administer it, so we have guidance that they turn back to school if they are less than ten minutes drive away, to have access to professionals with access to his emergency medication. I tried calling my husband, but got no reply and I knew that he was going to walk the dogs after lunch, so I fled work to drive the 30 minutes to school.

When I arrived at school, it was virtually deserted, as it turned out that all staff were in training and fortunately I have a fob which enabled me to swipe myself into school through the security doors. I found after school club but no sign of recovering Joshua as I had expected, then we tracked him down at the back of the staff training session! He was pleased to see me and did not look as washed out as I had expected, as he had not been given his rescue medication. I was debriefed about what had happened and then we headed home, with occasional signs of seizure activity still rumbling on. Once we had got home, Joshua headed straight for his den where he curled up on the settee with his boots off and he just wanted to sleep it off. I went into the kitchen to start off his evening meal, checking on him every few minutes. After 25 minutes, there were two sounds coming from den that told me clearly that he was awake again: the fast strumming of his guitar, followed by the repeated slamming of the door, banging rhythmically and with determination, both sounds told me that he was back in the room and raring to go. He ate his tea in record speed as though he had built up a real appetite; I imagine seizures use up considerable energy. He pottered around for a while longer and then he went to bed and I am hoping that sleep will act as a reset button and that today will be a better day.

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