One Year Ago Today -- 12/12/2012: Blogging Impaired & Diagnosis Reloaded

(12/12/2012, Wednesday) My grandiose plans of sleeping throughout the day today to catch up on sleep did not come to fruition. Gratefully, Evie crashed at about 2100 this evening, so I am hoping I'll sleep soon
ddddddddddddddddddddddddddDDDDDDDDDDDdddddddddddddddddddddddddddddddddddddddddddddddddddddddddddd..I better keep this short because it has already taken me a half hour to type this much (although I erased most of the sleeping misstypes.)

dssssToday we:

• Began reducing the amount of steroids Evie takes via her IV--the goal is to reach zero within a week.
  
  
• Stopped doing continuous dialysis. We've officially graduated back to intermittent dialysis.
  
  
• Had the physical therapists stop by, just as we were going to crash for a nap. Hopefully Evie will be willing to meet with them again--the timing wildly infludddddenced her willingness to comply.
  
  
• Ate food. Pancakes for breakfast, a sub sandwich for lunch, and a slice of pizza for dinner. She grumbled a bit about her stomach hurting--I'm hoping that it was the sleep deprivation talking.
  
  
• Had Grandparents visit for an hour -- regrettably she wasn't really ready for company, but they all enjoyed seeing each other anyway -- (they made a 17 hour drive to be here!)
  
  
• Eliminated much of the tubing mess that she's typically tied to, so she has less to get tangled in, and less to break while she sleeps.

• Changed rooms within PICU to a hopefully quieter spot.
   
• Last but not least: Received positive lab results -- evidence of byproducts in Evie's system which indicate that an e-Coli infection did in fact occur at some point, therefore it is most likely that Evie in fact has HUS, not aHUS, therefor the former diagnosis was incorrect, so this should be a one time deal that will not reoccur.
  

Depending on how we want to manage the insulin she needs, (shots vs. drip) we could leave PICU as early as tomorrow. It still sounds as though we'll be here (at Chapel Hill) for a couple more weeks, but leaving PICU would actually make it possible to let Evie's siblings visit her.

I'd get more specific and fancy with links, but I've managed to erase entire paragraphs on accident--I should make myself a cool looking t-shirt that says
 "Blogging Impaired: Writing Under the Absence of Sleep."

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.