What a day!!
Last Night I spoke with the epilepsy nurse and was so pleased to tell her the recent increase in M’s anti epileptic meds had worked. Boy did the seizure monster let us know the opposite today. On arrival at school Mikey had a biggy.. not tonic clonic… but floppy, drooling, eyes twitchy/gone, unresponsive. Hence ambulance was called and we spent the day in the hospital. They wanted to keep us but I made it plain that home was where we wanted to be and where M would settle best so home we were allowed. Seizures really scare the hell out of me. Perhaps three years ago as now they were unthought of of with M but the last two years they have definitely let us know they are unfortunately a part of his life and more recently they are evolving into different types and prolonged. I am awaiting arrival of a epilepsy monitor which will go under his mattress and alert me in the night to prolonged movement, peace of mind so I can get a couple of hours sleep knowing i will definitely be awoken in the event of a seizure. But now he has had this non convulsing “silent” seizure which took some shaking off I am again petrified. It is gone midnight as I type. M is fast asleep, I should be too so to be strong for whatever tomorrow brings or sleeping while i can before he wakes up thinking it is morning.. the bottom line is I daren't. I am sat in his room with my laptop. I have my sleeping bag ready in here to go to sleep close to him… but bringing myself to close my eyes is far from my plans.
Seizures are dangerous.. longer than 30 mins is classed as status and whether convulsing or not is dangerous. SUDEP is a very frightening concept. I don’t know how to deal with the whole thing. I will never get used to them. While they occur, instinct kicks in and you deal with it as you have to, its after when the what ifs and such kick in and the intense sadness at watching my boy go through all this.. the feeling of not being able to control what is happening to the person who means the most to you is immense and despairingly frustrating and upsetting to put it mildly.
A very good friend was on the news today talking about her beautiful family and the challenges they face. Some words she said have stuck in my mind “why waste time today worrying about tomorrow” I love the phrase, I just have to grasp it with both hands.