This past week has been crazy. I can’t even believe it’s already Friday again.
Last Friday morning, Pickle woke up and came down for breakfast and when he went to tell me what he wanted….it came out as,
“JInkaniybkiyewmif” and after about 5 mins of that there was no response for him. I knew he was in the middle of a seziure. I called the doctor and they had me take him down to ER. The doctor’s at the ER couldn’t even get him to say his name so they gave him this fabulous anti-convulsant medication that did nothing, except make him high and he was completely out of it. His eyes kept rolling back in his head, he couldn’t walk, etc, etc. He was admitted for overnight observation. Apparently one of the side of effects of the medicine they gave him is hallucination so that made for an interesting night. Watching him stare at the ceiling, absolutely terrified that whatever he saw above him, was going to get him. (note: this is also especially freaky if you’ve just watched the Exorcism of Emily Rose)
Saturday was quite possibly the worst day I’ve ever had with him. He woke up fine, but then he just went out of his mind. He was screaming and kicking. He spit on me, hit my
husband, kept trying to run out of his room, chewed through a wire to a monitor they had hooked up to him, wrapped a sheet and another cord around his neck. It was awful. They had to put him in a bed with netting all around it so he couldn’t get out and hurt himself. They also had to assign him a 1:1 nurse, which means, she had a desk in his room and he wasn’t allowed to be left alone. After holding him down and rubbing his head and whispering in his ear for over an hour, I got him to sleep and I came home to sleep.
Sunday we were told that they wanted to do another 24 hour EEG to check on his seizure activity, but that it couldn’t be started until Monday morning. D was much matter than the day before. Calmer for certain, but still seeming confused.
Monday he got hooked up to the EEG. The way this works is that they connect about 30 little wires to his scalp and cover them up, they connect all the little wires down to a pack that he carries on a strap on his shoulder, and then there is a long cord from the pack to a computer where the brain waves are recorded. Also on the computer is a video camera and a microphone. I had to be with him the entire time to write down and mark on the computer when he had an “episode”. I could only sleep when I was certain he was asleep and with all this crap hooked up to him, you can imagine why neither of us got much sleep.
Then because of things that were coming up on the EEG…they decided that he should remain hooked up for another 24 hours and add a new drug treatment before bed Tuesday night which put us into Wednesday.
Wednesday the good doctor came to tell us that what is happening to Pickle is that he is having A LOT (almost once per a second) of seizures in his sleep BUT the new medicine did start to tone it down. So we got sent home with orders to go back yesterday and have an MRI done because as it turns out…all of Pickle’s seizures happen in the left part of his brain where his speech & language function is, instead of all over. Which would also explain the weird grabled speech episodes. So, they wanted the MRI to make sure there was no brain damage there or anything like that which could be causing the seizures. I was really worried he would have to be sedated for the MRI, but somehow (with the grace of God, I’m sure) he was able to lay completely still for nearly 30mins. For a 9 year old boy with ADHD…this is nothing short of a miracle.
The MRI showed there isn’t anything wrong….except for the nocturnal seizures affecting it and unfortunately these are the hardest seizures to control.
D is doing much better. He’s back to his “normal” self and home which is a VERY good thing. I’m tyring to get my life and house back in order, as being away for a week takes it’s toll on EVERYTHING.
I’m planning some time out with girlfriends for this weekend and really looking forward to it. Oh and I lost 10lbs! It’s called the “I’m worried sick about my child” diet….I wouldn’t recommend it. But I guess it helps me with my resolution.