This morning at 6:30 I woke up on Ben's floor (my new bed) to the seizure cry.
Often when Ben has one of his tonic clonic (grand mal) seizures, he starts with a cry (this is a very good thing since sometimes he's in another room and I wouldn't know he was having a seizure otherwise). It is a very distinct cry because it is broken and jerky. Every time I hear it my heart starts racing a little bit and I go into emergency mode. One time I was in my local craft store and heard it. I looked around me but couldn't fine the source. It stopped but then I heard it again a minute later. When I heard it a third time I went searching. Finally I found a mother with a small girl in her cart who was crying (probably because she couldn't have something she wanted). No seizure going on...apparently it was just how this little girl cried.
Well, back to this morning...
I got him out of bed and just held him in his room thinking it would be over quickly. After about a minute I decided it wasn't going to stop soon and I needed to be timing it so I slipped out into the quiet living room.
I held him there for a few more minutes. Andy came out and saw what was going on and grabbed the Diastat in case. At five minutes I administered the medicine. At ten minutes Andy gave him a priesthood blessing. At 15 minutes I called 911. I hesitated before I dialed because it's always such a big deal when they come. Last time we called back in October at my parents' house the seizure stopped as the ambulance was on it's way. They still came and checked everything out and then strongly encouraged us to take him up to the hospital anyway. They kept him there for over an hour to observe him and make sure everything was okay. We knew he was fine...we knew what to look for...there was really no need for us to be there but the paramedics told us to go. Nothing against them...I know they're just doing their job, but we felt like we knew what to do and could handle it. Anyway, all this went through my mind in the second before I called. As I spoke with the woman I began crying...because that's what I do these days :) I hadn't cried to the 911 operator since his first seizure...I felt so dumb. After I sobbed out our address, phone number and what was happening... "Wait! Stop! Never Mind!"...he finished. I'm so glad she asked if I still wanted an ambulance instead of just sending it on it's way to check things out. I told her we were fine and breathed a big sigh of relief as I hung up.
Little, exhausted Ben fell asleep immediately. I held him for a few minutes and then made him comfortable on the couch.
This seizure was scary to me not just because it lasted so long (I know this is relative since some kids with Dravet have seizures that go many times the length of this one),
but because Ben hasn't had a seizure in his sleep in ages.
Seriously, I think it's been over a year. He was still sleeping in our room at the time. We were hesitant to move him in to his own room several weeks later but I got into two habits that helped put my mind at ease -
1) I prayed each night that if Ben needed me I would be made aware (and then did my best to have faith in that prayer)
2) I made sure our bathroom fan was off so I could hear him...we've always slept with it on because we both like the white noise while we're trying to fall asleep.
Now I sleep in his room 1/2 the night anyway (as mentioned above) but I will continue in these two habits to help me rest easier the other 1/2.
So, thank goodness for the seizure cry even though I really don't like to hear it.