UCLA update numero uno

I’m a tired, tired mama, so please excuse the brevity and dryness (is that a word?) of this post.

The last couple of days here have been great and better than expected.  Jill has been in good spirits and hasn’t been too grumpy considering she’s basically stuck in her hospital issue crib 24 hours a day.  She’s hooked up to 24 leads on her head and being monitored on video as well…between the wires and the fact that she has to be in the range of the video camera, she has a very very limited area she can move in.

I was afraid she would get hysterical after a while, but so far, so good.

Sassy as ever.

Owen has also been a little rockstar so far.  All is well.  I’m super happy.

In the meantime, we are trying to elicit a seizure while we are here.

We are weaning her off of her daily medication…and purposely depriving her of sleep.  “Luckily”, she didn’t get much sleep last night with all the night rounds and being in a shared room, so she’s already been a little zombie all day.  Tonight, I’m charged with keeping her up until midnight, and then waking her up ultra early (5:30?) in the morning.  Apparently being exhausted is a common seizure trigger.  Between that and lowered meds, we are hoping for an “event”.  (That’s what they keep calling it…and it drives me crazy…like it’s a birthday party or something.)

My fears at this point are the quintessential double edged sword.

On the one hand, I hate to wish for a seizure.  Hers have always been so severe and traumatic, it’s not exactly something I ever thought I would be trying to make happen on purpose.  I worry that it will be long and drawn out and difficult to stop.  But I suppose that if there was an ideal place for it to happen, UCLA is the place to be.  It’s just strange when my prayers are typically that they DON’T happen.

On the other hand, I am praying that she seizes…and soon.  Apparently we are here until it happens.  Even if it takes a week.  Or more.  This is a BIG deal.  By Sunday, my mother in law, who is here helping with Owen, has to leave and go back to work.  I can’t take care of both by myself in a hospital setting…and Owen is not allowed to spend the night here.  Trust me.  We’ve tried.  They won’t let it happen.  Hospital policy.  No one’s budging.  (Mother in law and baby are currently sleeping at a hotel nearby).  Plus, it complicates things for Andy who is working from home this week and staying with Henry and Lucy back home…he’s gotta get back too.

So…

If you might find a spot in your prayers, I’d love to put in a special request: that Jilly has a seizure soon.  And that it’s not too scary.

Weird, right?

God is good.

Always.

No matter what.

• Bio
• Twitter
• Facebook
• Latest Posts

jeannett

I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.

@jeannettg

Follow @jeannettg

jeannett

Latest posts by jeannett (see all)

• Dirt in a Jar, Laundry Scientists, and Clean Water - October 20, 2015
• Because Cake. - October 11, 2015
• How to design a luxury bathroom for less - August 12, 2015