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.
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| 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!)
