Weaning from her meds

I have a mama's daydream.  In that daydream, I can keep my girls in a soft, pink, fluffy, fuzzy, warm room, with soft pillows and stuffed playthings, and they'd be content to stay there forever.

Well, I got my wish for two weeks in March.  Elisabeth's first test for the surgery was EEG monitoring.  This means, she'd stay in the hospital for a week, while attached to EEG leads, the Dr's could have hard data about her seizures.

The tricky part before the stay was: She had to wean off her medication.  Dr. Quach, her epileptologist, gave me the formula.  We'd reduce her first medication over a week, then reduce the second med, over the second week.  She would get her last medication about 60 hours before her hospital stay would begin.

During those two weeks, we went nowhere, enjoyed being together, and watched her constantly.  She had no seizures at all!

For me, it was paradise.  We had been putting 500 miles a week on the car with the kids activities and classes.  Really. So, it was a nice break, and an opportunity to spend time with each other.

My mom flew in right before the hospital stay, so she could help watch the kids.  We were so excited to see her!

I was thrilled that weaning Elisabeth off meds hadn't caused any seizures to happen.  It had seemed to me that the medication wasn't doing a whole lot.  If she got rest periods, even on low meds, then why were we taking them?  Maybe her condition wasn't as bad as I thought.

After two weeks inside, the kids had some serious cabin fever.  They desparately wanted to go somewhere.  So, we took them to an Easter egg hunt.  There were 3 adults to 3 kids.  It was a gorgeous, sunny day, and we would be on the grass.  We could keep a good eye on Elisabeth, so we went.

She dropped her cup in the parking lot.  Had a seizure right there.  Didn't know it.  "Wait?  Why's my drink on the ground?"

I figured she was due.  There probably wouldn't be another one until that night.  So, we went to the hunt.

I forgot how egg hunts work.  The eggs disappeared like a tidal wave, as my startled kids ran behind the wave, finding nothing.  Katherine started to panic, and my sweet Elisabeth directed her to the bushes, where some eggs were still hiding.

They ran to the bushes, only to panic as all those eggs started magically disappearing, and Katherine still had an empty basket.  By then, her eyes were big, her lip was quivering, and I was about to make a trip to the store.

"Here, you can have some of mine,"  said a very nice little boy.  She brightened up.  Then she said, "Elisabeth's having a seizure."

There Elisabeth was, standing in the grass, swallowing and gulping.  I touched her arm, to keep her from running. "STOP!!! YOU"RE HURTING ME!!!!"  She still wasn't there.  People started staring and glaring.  I ignored them, and kept my hand on her.  "STOOOOP!!"  My mom, gently took her other arm.  She shook to get free, and run toward the road.  We held on.  Then, it was over.

My sweet girl blinked, and said "did I have another one??"  She was now ready to share her eggs with her sister, too.

We headed out to go home.  Enough was enough.  Except she had another seizure on the way out.
My mom alarm was going off again.  This isn't right.  It's too many.

Just then, like a miracle, our Dr. Anderson was texting.  "I'll be Elisabeth's Dr. next week."  I texted back about how excited Elisabeth was about the 'hospital vacation'  and that she was having seizures.  Her reply was, "Let me know if there are too many."

We drove home.  I rode in the back with Elisabeth. Emergency med in hand.  She had another in the driveway.  Then another.  And another.  And another.  I texted Dr. Anderson back.  "She's had seven seizures today.  3 in the last hour.  Is that too many?"

Sweet Dr. Anderson called me from the grocery store.  On Easter weekend.

It was too many.  A lot of seizures in a row are called a cluster. Elisabeth was clustering.  We gave her another dose of her medication.  The seizures stopped.  We would wait and wean completely when we got to the hospital.

I was wrong.  Her medication was doing a lot.  What would have happened to her, if we didn't have medication???!!!

Getting seizures at the hospital shouldn't be too much of problem.  We could be out of there by Monday night.  Or so we thought....