Monday, March 19, 2012

Everyone Wants To Help Her

Today I've had this overall feeling of how joyful it would be to be at a shooting range, or maybe a screaming contest.  Just angry.  Cianna's feeding is stopped at 10am.  She's not hungry of course so she goes to sleep around noon. we step out and talk local restaurants and emergency meds w/ the DR.s  As we are about to go eat I pop in and she's sitting up in the crib.  So the nurse says, "Goooo eat!" When we come back around 1:30 they are finishing hooking her up to the EEG.  We've seen twitching yesterday and more today.  They could just be from the meds, or coming back as the meds wear off.  She could go home with twitches. We have to find a point where the meds control active seizures, not incl. inactive ones which the meds don't touch, and her not being groggy/drunk looking/ acting.

Yippie! This is a fun road trip let me tell you!

So after that EEG cleanup, remember no nap yet, we get to work on feeding w/ an audience. Everyone means well, and we appreciate everyone, however you also want to impolitely shove everyone out of the room. MY BABY'S PEEVED AND TIRED AND WILL PROBABLY NEVER EAT IN THIS HOSPITAL BY CHOICE!!! A Dr. finally says, "I think she's to agitated to even eat if she's hungry let's see after she gets the nap." :) yay Dr.!! So Mimi and I sit on our couch, turn on the classical tv station and read and compute. Watching her lie there watching us. Dozing, then waking up. She's back to having anxiety issues, and now trust issues as well!! Yay!! Mom says when I had my eye surgery at 13mos. that after that I refused to lie down for a diaper change and to expect some trust issues w/ Cianna for the next few months. Right now I think I'd even prefer sitting on the paddle in the hallway to this. (Edited to add: Lin used to get in trouble in Kindergarten for talking, or getting up out of her seat a lot. The school wouldn't paddle kids that young, just have them sit on the paddle...)

She has to have braces on her arms while she sleeps so she doesn't pull out the NG tube. Those are annoying as well. STOP COMING IN HERE!!!!!! THAT DOESN'T HELP. She's awake again.


  1. Oh boy, do I know how you feel after dealing with family issues today. I feel bad that my issue isn't anywhere near as bad as your issue. :,( Hang in there and when you get back we'll rent a shooting range or have a scream fest.

    Michelle S.

  2. Hang in there. It can't be too much longer, hopefully. I can definitely feel your frustration reading this post. It makes me want to shoot or scream right along with you.

  3. I love the hospital-not! I remember Sam used to pull the covers over his face and "hide" from the docs when the residents were rounding. We finally asked for a "two doc" maximum (no residents/learning docs) in the room and that helped. Remember that you're the Mom and you can, ever-so-politely, make your point about her having too many interruptions, etc. It won't stop completely, but you can have them tone it down. Child life specialists can be your advocates too. In any case, big hugs to you and much compassion for your frustration. Go to your car and have a good primal scream. You've earned it!