Saturday, July 30, 2011

48-Hour EEG

Whew!  We're finally home!  It's more than 48 hours since we checked in, but doesn't it always end up being longer than you expect?  I'm happy to say that we survived, that Natalie did really well (even though she said quite frequently "May I go home?") and that we hope the test was a true representation of what's going on in Natalie's head.

For those not aware, we first noticed Natalie's seizures last spring, she's been on seizure meds for almost a year, and her last long EEG was only 24-hours (and showed the medicine she was taking at that time wasn't controlling her seizures).  This EEG was to see if her current medication is controlling her seizures well.  Since Natalie's seizures are so subtle--even moreso while she's on medication--it's often hard for us to be certain that something is a seizure, or just a kid behavior.  We really need an objective test!

Natalie and I checked into CHOC on Thursday, then Tom came and gave me a break for part of Friday (and the boys visited her when we switched both times), and she and I came home Saturday afternoon.  I have to say that knowing there is an end in sight to the hospital stay really helps me have a better attitude about the stay; when Natalie was in the hospital for 5 weeks after being born, and then again 2 months later for 2 weeks with pneumonia, the unknown duration of the hospital stays almost drove me nuts.  It also helps that it's only 2 days, not 2 weeks or 5 weeks!  I am getting too old to sleep comfortably in those chair-foldout-to-bed things they give the parents.

Anyway, here are the pictures!

Natalie's room wasn't ready when we arrived, so we killed time in the lobby.  She's checking out the DVDs we brought along.

Natalie actually fell asleep pretty quickly in the process of hooking her up.  Each of those colored wires on the right gets glued onto her scalp at a precisely measured point (marked in red with a China pencil).

Since she only woke up at the end of the hook-up process, she wasn't aware that there was tape all over her head, so she didn't try to peel it we didn't have to give her tape during the whole stay.  We did give her stickers throughout her stay, but this was so much less than we had to give her during her last EEG. I'm soooo happy that she used sticky stuff less, because this means she won't have "sticker withdrawal" now that we're home.

Natalie's having her first lunch: quesadilla, french fries, peas and strawberries.  And chocolate pudding.  They had a good selection of stuff Natalie likes, so she ate pretty well.

Here's the cute Natalie smiling for the camera, with the computer capturing the EEG behind her.  And Jessie.

Reading a book provided by Child Life.

Natalie watched television most of the time she was there.  We brought Sleeping Beauty, Beauty and the Beast, Jungle Book, (she watched all of these twice) Little Mermaid, Finding Nemo, Elmo's Potty Time, and several Signing Time videos.  She also got to watch Enchanted and Tangled on CHOC television.  
Needless to say, I AM PRINCESSED OUT!

During one of the videos, a CHOC volunteer came by to sing with Natalie.  Natalie wasn't really interested in singing (normally, she is), I think because it was interrupting her princess movie.

Tom captured this great picture of Natalie.  Tangled?  Yes!  She had the set of wires on her head, plus a pulse-oximeter on her toe (the wire coming out of the top of her pajamas).

Here's Natalie doing her thing with a butterfly sticker, rubbing it on her face.

But she did do other stuff besides watching she's playing a matching game.  Oops, it's Disney.

Ok, here's something that's not Disney...a Melissa and Doug puzzle.

And the computer screen at the same time she's puzzling.

Finally!  It was time to take the "hat" off.  Of course, TV provided the perfect distraction, since there was a little hair-tugging involved.  We didn't stay for a shampoo, because it would take a good soak to get all that glue out.

The first thing Natalie did when she got home was spin in the swing.  She was so happy to be home!

And now the results...the EEG was still abnormal, meaning there were still some seizure events, but the full report won't be ready for a week or two.  So we won't know until then how many seizures are happening and how long they are.


ThatGirlSaid said...

Wow, what an experience! I am so glad that test is available to you. Please let me know what you find out. The pictures are precious, and I'm glad you are home. <3 Susan

Jessica said...

What a sweetheart, yes, I have to say it again, WHAT A SWEETHEART!!!! My Rach would not have any other this.. Natalie always makes me smile. Way to go kiddo, I was thinking about you, from many miles away. It will be nice to get more answers so that we can learn how help you out more. Hugs

Sarah said...

She is so good natured. What a sweetie. Thank goodness for Disney!!!

Jacqui said...

What a marathon session. She is such a brilliant girl. To stay calm with all those wires, I would have felt really claustrophobic with them on my head. Love the photo with the butterfly sticker - seriously made me smile. Hope the report back gives you more detailed insight into what's going on for her.

Nikki said...

She is adorable! glad she handled it well.

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