One Year Ago Today: 12/22/2012 - The Writings of Evie

(12/22/2012, Saturday) Evie slept well last night, and slept through the majority of the day today. The physical therapist came by and tried to work with Evie, but she was already tired to the point of collapse so we cut it short. On the positive side of things:

• The amount of blood loss today was significantly less.
• C-Diff tests came back negative.
• She had very little stomach pain (compared to yesterday.)
• She did well enough that she was on regular oxygen (but not regular room air) throughout the day, and went back on to her BiPAP at bedtime.
• She's a stomach sleeper at home, but here at the hospital, the position she's defaulted to as the most comfortable is folding herself in half at the waist--I like to call it the pretzel of pain, but she likes it. It reminds me of a stretching exercise I always failed in 8^th grade P.E--Anyhoo, I digress, the point is, by convincing her to sleep primarily in a sitting leaning backward (think lazy-boy) position, most of the swelling in her face dissipated through the night.
  
  
  

She did vomit again tonight -- it appeared to be a mixed bag of stomach acid, lung crud/phlegm that she's coughed up, and a bit of blood. The theory is that a side affect of a medicine she just started is the culprit, so they plan on tweaking that a bit. They have not yet determined the cause behind her GI bleed.

Other random stuff:

• The BiPAP machine is very loud, and it is virtually impossible to hear Evie talk so she writes down what she wants to tell me. (Which makes me feel a teensy bit better about the fact that she has done essentially zero homework in the past month.) To communicate now, she has to do a lot of writing -- here are a few things she's written:
  • "Daddy my dreams are getting me frustrated because all they make me is hungry."
  • "I would like for you to do me a favor it is that I would like you to find some fingernail clippers."
  • "My mouth is dry I want something to drink!"
  • "I would like to make a birthday card for Joey."--He is one of her classmates, and she correctly remembered that it was his birthday yesterday.
  • "With a little help from the nurses I would like it if we could set up some stands with streamers for the infants."--She recognizes she's one of the big kids in PICU (comparatively speaking) and wanted to make curly ribbons to help decorate the infants cribs here to make their rooms more festive for Christmas.
  • "Dear dad I know what Santa can get me and my sisters this year. Well while I was watching T.V. I came across a commercial about Stompeez they are the things that I think Santa can get this year."--I told her today was a bit late to mail in a request to Santa. She looked at me with one of those "You-know-that-isn't-a-real-limitation" looks. So then I looked them up online and read aloud several unfavorable reviews that essentially called the toy and the company that makes it total garbage. She's still convinced it is a great idea.. the advertising exec that made the commercial really needs to find a better cause to throw her/his talent toward.
• You may recall mention of her meeting a 14 (or so) year old boy from the burn unit that she played with briefly in the playroom the other day, and how she was sad that she couldn't go back again the next day when she returned to PICU. She decided to make him a Thank You card, and then it was my responsibility to track him down and deliver it to him. It was fun to see him blush with embarrassment in front of his mom. Good times.

Today was a pretty straightforward day which was nice considering that our pathway to recovery has not been without its twists. Thank you all again for your prayers of faith on our behalf.

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.