epilepsy, a whole new world

It has been quite a day.  8 pm, sitting on the sofa bed in room 336 in Dell Children’s hospital… It has been a long day.

Sunday February 21, 2010 was a day that I will remember always.

We made it with the washer and dryer people delivering the new stuff and getting it set up.  We were getting ready to go to Best Buy to yell about the big scratch they put in the front of the dryer when Adam came looking for me.  He wanted to know if something was wrong with Amandya, or if she was just joking around with him.

She wasn’t joking.

When I got to her, she was on the floor, her eyes were rolled back in her head, eyes half open, arms stiff, face contorted, drooling.  She was flailing; jerky motions.  I was scared… really really scared.  When she started to come around to open eyes and focusing on me, I asked her if she knew who I was… Mommy… I asked her what grade she was in in school… she sounded like a 5 year old but told me she was in 8th grade.  Later, in the car on the way to the hospital, I asked her how old she was… again… in a 5 year old’s voice, she said she was 13… which was how old she was in 8th grade… 2 years ago.  She kept trying to take off her clothes.  I got her to the car… we got her to the ER… by the time we got there, she was starting to have some control over her limbs.  By the time she was in a bed, she knew what year it was and was starting to be coherent.  It was a long 10 minutes.

It is amazing what adrenaline will do…

We stayed long enough for her to pee.

They discharged her, and said, you need to follow up with Neurologist in the morning.

Out to the car… and starting home.

We made it about a mile… maybe a mile and a half.

I was trying to get her to talk to grandma on the phone.  She said… later…

I got the phone back and tried talking to my mom and Adam said… Oh crap (although a little more colorful… )

I turned around in the seat and she was standing up in the back seat of the car, rigid… her limbs stiff, face contored, drooling, eyes rolled back in her head, eyes half open.  We turned around at the red light… pretty quickly… and high tailed it back to the ER.  She was still seizing when we got her there.  We had to half carry her, half wheel chair her into the ER to keep from getting her legs caught under the wheel chair.

She got put back in the still dirty room where she was before.  They hadn’t even had time to change the bed linen.

She never did come completely around.  She threw up several times… even with the anti nausea medicine… she thew up the anti-convulsive meds… they ended up giving them to her in an IV.  After a chest x-ray and the IV started… we took a trip via ambulance to Dell Children’s Hospital (where we are now) and settled in.

The hospital is really nice.  The decorations… the staff… the rooms… it is a really nice hospital.

The couch is uncomfortable.

The view is pretty.

Dr Reardon came in and talked to us (me… she was still-again pretty out of it).  It looke like she probably only has epilepsy.  EEG today… and an MRI to rule out brain abnormalities and tumors.  But once it is controlled for 6 months she will be able to drive and will be able to have a normal life.

Monday AM.

Called mom and Gin.  Larry called (not sure if Hospital is in network or not… double the deductable… lord… At least she is in the best place she can be.  Phone is dead.  Went down to get breakfast.

Oatmeal, breakfast taco, milk and a muffin (Muffin for Adam).  Choking down the oatmeal.  Taco will be for later… 3 aleve… 1 bc pill… 1 singluar.  Coffee in the family break room.

February 22, 2010

No stress?  No… stress.

Ankles hurt.  Knuckles hurt.

Scared an 11.

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One response to “epilepsy, a whole new world

  1. Oh, I’m so sorry to hear this. How very scary!
    Hang in there. ((hugs))

    Like

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