Hell Week 2012: Part 1 (The EEG)

Do you remember how I mentioned surviving Hell Week 2009?  It was the week before Christmas three years ago, and Derek had to have an EEG, an MRI, and an autism evaluation in a matter of 5 days.   I NEVER, in a million years, thought I could have a week that would rival that...

I was wrong.

I just survived Hell Week 2012. 

It started with Derek having another EEG last Friday at Children's Hospital in Omaha.  (12/14/12)

It was the same day as the school shootings at Sandy Hook.

It was also the same day Grandpa D passed away.

Saturday morning we headed to Madrid for the funeral of a step-uncle (who had passed away on Thursday).

Monday we attended Grandpa D's funeral.

Monday afternoon I received a call from Tyler's school and found out that a teacher at Tyler's school had collapsed and died.  It was one the mother of one of my son's classmates. 
http://www.kearneyhub.com/news/local/axtell-school-mourning-teacher-wilson/article_b677443a-4a0c-11e2-a8ea-0019bb2963f4.html

Monday evening I received a call from Derek's neurologist and found out that Derek is having seizures.  (I'd expected this all along, but it was still a shock...)

Wednesday morning Derek had an MRI in Omaha. (12/19/12)

Wednesday afternoon I drove through NASTY weather for four hours to get back home to my OTHER son, who was staying with a babysitter.

And NOW, autistic people everywhere are being threatened in the wake of what happened in Newtown. 
http://healthland.time.com/2012/12/19/guilt-by-associationtroubling-legacy-of-sandy-hook-may-be-backlash-against-children-with-autism/

I don't know how to process everything that has happened.  I feel like I'm on a rollercoaster and my emotions can't keep up. 

What do I write about first?  Or do I not write at all?  Should I skip the blogging and try to get into the Christmas spirit?  I have Christmas presents to buy and wrap, holiday baking to do, and I'm so behind on cleaning I can't even find my floor. 

I guess maybe I should start with the EEG.  That's enough for today, right? 

I have to back-track a little, because I'm frustrated.  Derek had an EEG when he was 2.  But it was inconclusive.  It was a sleep-deprived EEG (do I have to tell you how hard it was to keep Derek awake???) and Derek had electrodes hooked up to his head.  That did NOT make him happy.  He was so agitated by the weird things on his head that he couldn't relax.  Even sitting in my lap, watching tv, in a dark, warm room, he was unable to fall asleep.  He only made it 5 minutes through a 10 minute test.  Then he was yanking the electrodes off right and left.  Yeah...EEG #1 was an utter failure. 

So, when the neurologist told me a few weeks ago that she wanted to do another EEG on Derek, I cringed.  I told her what happened the first time and she told me that Children's Hospital in Omaha can do partially sedated EEG's.  That way Derek wouldn't have a problem.  YES!!!!!!  Definitely worth a try. 

For as long as I can remember, Derek has had "staring spells."  He just suddenly gets a blank look and stares off into space.  He doesn't respond when I call his name.  I have to snap my fingers in front of his face, clap my hands, bang on the table, or even TOUCH him to get him to snap out of it.  They happen several times a day.  And they freak me out. 

Friday morning Derek and I checked into the hospital.  I gave him some new toys to play with, which helped immensely since he wasn't allowed to eat anything.  He played with "Dark Vater" all morning.  He played by the Christmas tree in the lobby and looked at the running water in the wishing well (did I mention Children's is actually pretty cool?)

Then they put us in a room.  A nurse gave his some medicine to make him sleepy.  He fought it like no other.  He cried and thrashed and bucked...I held him in my arms and rocked him (and cried too).  Finally, he fell asleep.  I felt like I'd won a battle.  The nurse wheeled him away for the EEG. 

YES!!!!  He's asleep!!!

Waiting for him to come back was hard.  Especially since news of the Sandy Hook shooting was the ONLY thing on tv.  All I could think about was Tyler being at school and AWAY from me.  I wanted to have him near me.

Derek finally came back and slept for a very, very long time.  Then he cried and whimpered when he woke up.  I could tell he felt like CRAP.  He kept saying "Go Home."

In Recovery

Dazed and Confused

Even though he was loopy, I had to drive three hours home that evening.  I had no choice.  We had to leave for the funeral in the morning.  We stopped at a gas station to go to the bathroom once and Derek had trouble walking.  I had to carry him.  He acted like he was high.  He was babbling about cookies and crackers and ice cream.  Hilarious. 

THEN came the call on Monday from the doctor.  She said that the EEG showed sharp spikes in Derek's frontal lobes, indicating that Derek was having seizures.  She was going to put him on Oxcarbazepine and gradually increase the dosage.  She also wanted him to have an MRI. 

Honestly?  I don't know what to feel at the moment.  Scared?  Yes.  Overwhelmed?  Yes.  Relieved?  YES--because they found what I've suspected for THREE YEARS.  Guilty?  Yes--because he should have been diagnosed back in 2009. 

This parenting thing?  Not for wimps.  What did I learn this week?  I will do whatever I have to do to help my children.  Watching my son go through so much over the past few months has changed me.  There is nothing like having a sick child to make you realize the true value of health.  I would sacrifice my own health for theirs if I could.  I would die for them.  I love my children so much that when THEY hurt, I hurt.  Our lives are forever entwined, and I wouldn't have it any other way. 


"Man performs and engenders so much more than he can or should have to bear. That's how he finds that he can bear anything." ~William Faulkner