When I got home from work last night, Joshua was pleased to see me. He was snuggled under a blanket watching his Live 8 show with Yorkshire Grandma, the picture of contentment. He gave me one of his bear hugs and told me that he liked me and all was well. We had an early tea , so he had an early bath as his hands were cold, so that warmed him up.He was reluctant to get out of the bath and he soaked the bathroom floor with his protest splashes. He pottered about in his pyjamas but was tucked up in bed before 9pm and I expected to be in for a quiet night. I came downstairs to watch some television, but I soon nodded off.
I had a rude awakening a few minutes later, with my husband shouting for me, first through the baby monitor that I bearly acknowledged as it filtered into my dream, but then he came downstairs to wake me with the words that I hate to hear : ” Joshua is having a do!” That brought me round immediately and I ran upstairs, to find a quivering Joshua on his bedroom floor. He had either fallen out of bed or he had climbed out to come to seek help and had fallen, but he was wedged between the bed and his bookshelf, rapidly going in and out of spasms. They did not slow down while we comforted him and my husband helped him back onto his bed between seizures. I sat with him, rubbing has back for several minutes,but they kept on coming. As we did not know exactly when the first one started, we agreed to give him his emergency medication, to intervene as they showed no sign of abating.
It is never an easy decision to administer Midazolam as it leaves him so groggy for 24 hours afterwards, but on this occasion, as the seizures kept coming, it was the right thing to do. Joshua seemed to know what was coming and he took the anaesthetic well, with no spillage , which is always a relief when you are syringing it into his gums during seizures. Thankfully, almost immediately I felt his body relax and quickly, the frequency of seizures began to slow down. I lay next to him, singing and talking to him, as he fell asleep and the last spasm left his body. My mind started to imagine what might have happened if he had got to the stop of the stairs before his seizures began, so I held him tight, relieved that he had fallen where he did.Eventually, I slid out of his bed and we watched him closely from the baby monitor downstairs, as we had our hot drink before bed.
As I went up to bed, 30 minutes later, his breathing was loud and laboured and he was sprawled across the bed, fast asleep. Taking the baby monitor to bed was not going to reassure me enough and so I curled up across the bottom if his bed to watch him and listen to him, and grab what sleep I could. At 2.30am I climbed off his bed, his breathing sounded normal and he was no longer clammy to touch, so I retreated to my own bed for three hours of better quality sleep. I had agreed with Yorkshire Grandma, who is living with us for another week, that I would go swimming this morning, but I am not now going as I want to see how he is when he wakes up later – I will swim another day.
Despite many years of practice with epilepsy, it never gets any easier to see Joshua suffering like that and I never give him Midazolam lightly, it is always a dilemma. It is of course typical as I had sent an email to his respite provision, just yesterday, bragging that he had not needed any intervention all over the Christmas holidays. Let’s just hope that this is not a new cluster of seizure activity, lets keep our fingers crossed that last night was a one off and that it will not rumble on this respite weekend.