One Year Ago Today: 12/20/2012 - Lung Improvements and PT

(12/20/2012, Thursday) Due to the previous rough night, Evie and I both spent a good portion of the day sleeping, but we did have a few things of note happen today:

• The Lamborghini Juice (Soliris/Eculizumab) company, Alexion Pharmaceuticals sent representatives to provide a variety of printed materials to explain in greater detail and clarity what aHUS is, including a Patient Symptom Tracker and kids guide. It was nice of them to come by, and the printed materials are great, but I *really* hope that we really are not in the aHUS boat, as I am still clinging to the hope that once we heal everything that is currently damaged, we'll have mastered this experience and will not have to repeat it.
  
  EVER.
  
  That being said, I think the line between HUS and aHUS is a bit fuzzy, and due to the non-traditional method they used to discover evidence of shiga toxins in Evie's gut, I think there is still a bit of "Are we sure?" when it comes to putting her on either side of the that murky delineation.
   
• The physical therapists stopped by today. I'm so glad they did. Evie has nearly reached the four week mark when it comes to having been off her feet, so it is becoming more important every day to find ways to get her moving and exercising. The trouble is, it seems every day there is a new issue that makes her feel awful, and leads her to have no desire to move.
  
  
  
  
  They had her stand on her feet for a few seconds twice, and she stood solely on each foot briefly while holding her walker. She also did a few different types of leg lifts, all while playing connect four, and being forced to reach far with her arms each time she wanted to grab a checker. I need to convince her to play that way with me--and I need to be smart enough to recognize when she has enough energy to do it, and when she's running out of steam so I don't over-exert her.
   
• There was a good portion of the day where she was able to go off of the BiPAP, and back on to regular oxygen. She was actually doing really good today, the problem is her breaths are too shallow, and it makes her work too hard from a pulmonary standpoint. We put her back on BiPAP in the late afternoon so that she wouldn't become too exhausted. The nurses report that her lungs sound much better, and she has coughed up enough crud that her pneumonia is roughly back to where it started with only the bottom lobe of her right lung being noticeably consolidated (I've got to say: I think that the medical field made a poor choice, and "consolidated" is a really lame term to use in this case.) My goal is to have her spend her day laying on her left side tomorrow, in hopes that gravity will help with the healing.
   

I was able to have Evie's nephrologist Skype with Heather today to give her a quick update. Technology is handy. Evie went to bed around 2330 tonight after having enjoyed Miracle on 34^th Street. Our sleep schedule is out of wack, but at this point, I'm just elated when she gets enough. I'm crossing my fingers to get an early Christmas present of enjoying our 8^th room at the hospital, so long as it isn't in ICU. Preferably on the 6^th floor so we don't have to move again. Hopefully my wish comes true within the next four days.

I may have more to comment on this tomorrow as we have a meeting scheduled with the majority of Evie's doctors to hash over this, but here is essentially where we're at:

• Kidneys: I can happily confirm that some urine production has occurred. At this point we're talking single digits of milliliters per occurrence, but still that is truly good news. Time will tell just how far back they will bounce, but it is encouraging.
   
• Pancreas: Still cranky about food, and possibly suspected of not producing enough insulin. She's only been off that steroid for her heart for a day or two, but reading between the lines in the furrows of her doctors faces, I'm guessing they expected the playful banter between her blood sugar and her body's insulin to subside, and we aren't there yet.
   
• Lungs: Only one of five lobes in her lungs (specifically the bottom lobe in her right lung) are consolidated. Currently we're treating this via antibiotics.
   
• Heart: If we could get the aforementioned organs to respond to treatment like her heart has, we'd be home already. Her heart currently presents no issues.
   
• Muscles & Bones: I know I alluded to this earlier, but nearly four weeks have gone by that she hasn't been moving or eating or drinking as much as she would on a "normal/healthy" day. Nutritionally, this leads her to be lightheaded and dizzy. She is too weak to do much. We need to resolve the major organ issues above before we can make any significant ground on this issue, nevertheless, it is most likely that this issue may (if we aren't part of the aHUS crowd) have the longest lasting impact.

I think that is everything for tonight. Thanks again to everyone who has fasted, prayed, Skyped, called, and or sent emails, gifts, or other well wishes to and for my little brown-eyed girl. You guys are the best. Merry Christmas, and travel safe.

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.