Epilepsy Awareness Month Day 3: The Decision to Call 911

Robert’s seizures do not scare me.  He has had seizures for as long as I remember having my second little brother.  The only reason he needed to be taken to the hospital due to a seizure was because of what happened during the seizure: falls, concussions, broken jaw, a burned arm, near drowning.

Of course, Robert told everyone he was
"excellent."

I had to pick him up from school a few times when he had a seizure (resulting in a loss of bladder control) and mom was at work. I picked him up and drove him home.

Let me rephrase: Robert’s “normal” seizures do not scare me. 

It’s the out of the ordinary ones who give me a run for my money. 

The seizures that last three or four minutes – watching the clock in case he doesn’t come out of it at the five minute mark.

Those scare me.

A cluster of seizures with falls involved.  He had numerous seizures last February – complete with falls and his legs bent every which way. I thought for sure he was going to break something during that turbulent month.

That scared me.

A cluster of seizures that do not stop.  Robert typically has cluster seizures involving five or six seizures but I am able to give him 1 mg of Ativan between them and they stop. 

Sunday they did not stop.  Twelve seizures before I was even able to safely give him an Ativan. Then several more while I waited for it to do its work.  When the seizures didn’t slow, I gave him another Ativan.

That scared me too. 

Richard and I waited.  I called the on-call neurologist (because, of course, this couldn’t happen during office hours)!  He advised I take Robert to the emergency room. 

I didn’t want to.  I really don’t like taking Robert to the hospital because I know the decline that happens afterwards.  I know what a mess the ER is (great staff but it is a trauma hospital so it is very chaotic).

Here’s my confession of the day:

I really didn’t want to call the paramedics this time because we have a trip to Disneyland planned (for Epilepsy Awareness Day at Disneyland) and our flight leaves on Tuesday.

I am determined to take Robert to Disneyland, gosh darn it! I am willing the Universe to make this happen!  Robert is very excited about the trip (as are Richard and I) and I am not going to let anything stand in the way of going. 

That might sound irresponsible but I know how hospital visits go.  I did not want Robert admitted and didn’t want him to have any sort of decline/

By the time I called the paramedics, I had lost track of the number of seizures but estimated approximately 25 – 30 in a two hour span. 

That’s as many as he has in a month.

So, yes, I called the paramedics. 

BUT, UNIVERSE, WE ARE STILL GOING TO DISNEYLAND!!

Robert had another seizure while the paramedics were at our house and one at the hospital that I witnessed, once I was with him again.

That was at 1:00 p.m.  Robert finally saw a doctor and had blood drawn and a chest x-ray to check for an infection.  Nothing came back and I insisted it was okay to discharge us.  I promised to contact his neurologist the next day. 

Robert was discharged and I put him into the car around 8:00 p.m.

He proceeded to have three seizures on the way home and two once home.  I gave him another Ativan, got him ready for bed and watched him on the video monitor for quite a while. 

The neurologist’s office opens in a couple of hours and I will call them to see what they say about all of this. 

For today’s Epilepsy Awareness Month video, I am posting the video I took of Robert while he was having several of his seizures.  I actually was trying to capture one for the doctors but since he continued to have a cluster of them, there are several on the video.

I know on Day 1 I promised short videos.  This one is long and I haven’t had a chance to edit it.  Skip through anything that doesn’t interest you. 

(And, yes, I will post video of us in Disneyland – because WE ARE GOING!)