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.

 

Related Posts Plugin for WordPress, Blogger...

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.
jeannett

Comments

  1. 1

    Gosh, what a hard situation to be in! Hope you are home soon.
    Bron @Stop That Owl´s last blog post ..Blogtoberfest Day 20 – Man Flu

  2. 2

    Man, I can’t even imagine how you must be feeling right now :( I’m glad she is doing so well – my kid would FREAK in that kind of situation. Thinking of you guys and saying prayers!
    Kirsten´s last blog post ..Yoooohooooo….

  3. 3

    Oh, wow…praying that it happens soon so the doctors can determine the next course of action. Hang in there!!!
    the Blah Blah Blahger´s last blog post ..SHRIMP TACOS

  4. 4

    praying, sweet jeannett! grateful for such ease so far!
    god is faithful. sending hugs. LOVE ya xo
    hannah´s last blog post ..shop news!

  5. 5

    Definitely praying for you and your family! I know it is crazy to hope for a seizure, but I know it will help the doctors figure out how to best help Jill. The family that I used to babysit for when through the same testing awhile back, and I know they got so many answers. Jilly and this boy have very similar seizures from what I can see. Anyway, just know you aren’t the only one who has gone through this, and you are right, if there is a place for her to have a seizure, it is right there with all of those doctors around.

  6. 6

    Jeannett, praying that the Lord will keep his hand upon you both, grant you peace, understanding, patience and most of all an uneventful, but extremely informative seizure. Much love mama!!

  7. 7

    Praying for you, Jilly, Owen, Andy and crew. May God grant Jill the “perfect” manageable, controlled seizure that allows for the most information, with the least amount of risk. We love you to pieces… one day this will be part of a dramatic happy ending novel you write, and make a zillion dollars off of. After Jilly becomes seizure free and a rock star, of course!!!

  8. 8

    What a odd combination of emotions you must be going through right now. I can’t imagine. You are all in my thoughts and like Becky said, may it be the “perfect” seizure, so that the doctors get what they need to help your girl, without it being too traumatic for her. I hope you are all home very soon!
    Heather O.´s last blog post ..Falling for Autumn

  9. 9

    I love how you always end your post with such amazing perspective. Seizure or no seizure you are so right – God is good, all the time, no matter what. I love this phrase. If I were ever to get a tattoo this is what I would have inked! :) PRAYING for your sweet Jilly.
    Brittnie (A Joy Renewed)´s last blog post ..Clara’s first Connecticut vacation

  10. 10

    Hang in there momma. It’s a long hard road, I know. Seems like just yesterday we went through this same thing. We were there for just over 48 hours and that was ENOUGH. It sure looks like she’s handling her wires really well!! Praying for your answers, as well as your sanity today.
    Lindsay´s last blog post ..Late October in Kansas

  11. 11

    Praying you get some answers soon. Hang in there. Prayers being lifted for the entire family.

  12. 12

    Couldn’t bring myself to pray the words for a seizure! So, I prayed that He will do what needs to be done! God is good. Always and forever.

  13. 13

    Hang in there! Praying for you !!!!

  14. 14

    Praying for intervention from God.

  15. 15

    LOVE YOU JEANNETT AND PRAYING FOR YOU AND JILLY! YOUR SUCH AN INSPIRATION……..XOXO

  16. 16

    Praying for you all! My friends went through the exact same thing… so hard to pray for your sweet girl to seize! Their daughter siezed after after a few days and now (after the surgery) she hasn’t had one in months! Praying your story is similar!

  17. 17

    Saying my prayers for her and your family!

    I really enjoy your blog…thanks for sharing your thoughts!

  18. 18

    Praying for your family…hang in there…
    laurie´s last blog post ..a change in the diet

  19. 19

    My mom is epileptic and they did that to her as well to see where in her brain short circuits. Her trigger was “easy” as all the did was do a bunch of strobe lights to get her to seize. Scariest thing ever but her seizures are now few and far between after revising her treatment.

    • 20

      And yup, being overly tired is the only trigger my mom has now. It’s usually jet lag related if she has them, but now we’ve learned (Because she is stubborn) is that we make her sleep, and have her double up a dose of her meds. I honestly think it’s been 12 years since her last seizure!

  20. 21

    Sending hugs and good vibes your way!
    Emily @ More Than Just Dessert´s last blog post ..17 things/moments that changed my life…

  21. 22

    He’s got you in the palm of His hand…. not better place to be! Hugs and love to your family!
    Rachel R Adams´s last blog post ..who are you?

  22. 23

    I’m praying for you and your sweet baby, tonight.
    I’ll pray, specifically, for a seizure.

    All my love,
    Rachel
    Rachel Reeves´s last blog post ..say goodbye and let it go.

  23. 24

    Just wanted you to know I’m definitely praying for your little girl! God is mighty and so good!

  24. 25

    I’ve read this post twice and keep thinking of you and wondering if Jilly’s seized yet, it’s about 8 am here in the midwest, you’ve probably already gotten your sweet girl out of bed. I’ll be thinking and praying for you all. You are capable of more than you know, hang in there.
    Emily´s last blog post ..Chicago!

  25. 26

    What a little sweetheart she is…wishing for the best for your lovely girl.

  26. 27

    God bless you all! Sweet Jill…she looks super sleepy in your last picture, but pretty as ever.
    Emily´s last blog post ..Friday Funday and Insta-Friday #6

  27. 28

    Sending lots of positive thoughts to you all. Hope that she seizes soon so that you can get her out of there. That’s got to be tough!
    Alyson @Vintage Sunshine´s last blog post ..the weeks end

  28. 29

    I can’t even imagine how hard this situation is for you. I’ll be sending lots of love and prayers to you all!
    Katherine´s last blog post ..Keepin up with the Sulli’s…our new Addition!

  29. 30

    praying for you. definitely. and for all that needs to fall into place for you and your family.
    Anne´s last blog post ..<< my week in review: 10/19-25

  30. 31
    Christine M says:

    Praying for Jill and your entire family. God is good all the time and all the time God is good

Trackbacks

  1. [...] I should be on Project 29: Switch to gentle, eco-friendly hair care.  But, I knew that with a hospital stay this month, and all the prep, coordination and general stress it would bring with it, I wouldn’t be able [...]