Deja Vu

This Cinderella did not go to the ball last night as Joshua’s epilepsy got in the way once again. I had had a good day at work and I am always aware at 3.15 that he would be leaving school, butI was particularly aware of the time yesterday ,as I was aiming to leave at 4pm to take him for a routine appointment with his Doctor.  But at 15.23 I had a call from the taxi driver to tell me that Joshua had begun fitting as they had left school and so I told him to turn around and take him back there where he had access to his rescue medication and staff, including nurses, who were trained to administer it.

They did that, while I called the school to try to warn them that Joshua was en route back so that somebody could be ready to greet them with Midazolam when he returned, should he still be having seizures. I then rang my husband as he was nearer schoool than me, I was half an hour away, and he also turned around and headed for school. So I had got things in place, I just had to sit, behind my desk, feeling helpless and out of the loop. So I called the taxi driver back and he had just pulled into the school car park so everyone was soon going to be reunited, which was ideal as he was still having seizures. The drug was given, still in the taxi, just before my husband arrived and then it was the waiting game to see if it had taken effect. Joshua was taken back into school where he lay quietly on a water bed and gradually his twitching slowed and soon he was snoring, all panic was over and thanks to quick action, no ambulance was called.

Thanks to the technoogoy of the mobile phone, I was able to reach the people who mattered in this drama and to keep in touch, to keep my mind at rest as all I wanted to do was jump in my car and join them in school. But instead I made my apologies about probably not being able to make it to the office leaving party at the restaurant, and I went home to await the arrival of my boys. While I waited, my imagination began to play with scenarios about ‘what if’ had happened, which is always frightening territory to enter.

A very pale Joshua arrived home with his Dad, but he was coming round, so he gave me a hug, smile and a high 5 when he saw me and he came inside, asking for his boots to be removed as usual. He went to the back of the kitchen door to fetch his apron, indicating that he was starving hungry so I put his tea on immediately. Joshua was a quieter version of himself, understandably after a dose of his anaesthetic-based rescue medication, but his cheeky personality still managed to shine through. He ate all of his tea, then settled down for another nap, knowing that he was safe in his own home with both of his parents hovering over him, fussing. This was not the evening that I had planned, but I would not have been anywhere else.

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That Demon Epilepsy

Yesterday was a tough day : Joshua did not sleep at all the night before last, he was very restless and very loud – he kept shouting for his Mummy and Daddy in a manic voice, even if I was standing right next to him. Finally at 5am the anticipated seizure arrived and knocked him off his feet while he was playing the piano. I expected him to give in to sleep then at least, but he still resisted and ate another breakfast. With some reservations I packed him off to school , requesting that he is watched especially carefully as I was expecting another seizure at some point.

I then drove an hour away for work, and my husband is far away on holiday with his Mum, so I was school’s main point of contact. I checked before I went into the meeting and was pleasantly surprised to hear that he had been fit enough to go 10-pin bowling with the rest of his class as is their weekly outing. So I relaxed. But sadly he had a seizure on the way back from bowling and from the photograph I was sent and the fact that he was still manically shouting, I knew that he was going to have more. So I left my meeting early to bring him home, I too by this stage was feeling the after-effects of no sleep.

When I reached his classroom, he was very flushed, with staring eyes and shouting and I was certain that I had not over-reacted. During the journey home, his eyes kept dispapearing and he was very vacant, suggesting that he was still fitting. So on arrival home, I administered his emergency medicine and we both went for a lie down. Two hours later, I woke refreshed and restored. The nap did not have quite the same restorative effect on Joshua who lay in bed, awake, a while longer. He was still shouting.He ate his tea and had a bath, but neither were with his usual enthusiasm, but as well as the lack of sleep and the seizures, his exhausted brain also had the rescue medication to contend with, so no wonder.

I slept next to him last night, to be on hand if another seizure should take hold, but instead I was subjected to restless torture of hair-pulling and smacking. At 3.30, I awoke from some kind of sleep and escaped, giving Joshua some Rice Krispies and leaving him to settle back down.

So who knows what today will bring? At least I am taking him to school and I will be in school all morning as it is the Parent Coffee morning today. So if things go awry again, I can be on hand at least.