One Year Ago Today: 12/4/2012 - Progress: Catch You Later PICU! & Potential Diagnosis & Prognosis

(12/4/2012, Tuesday) Evie left intensive care and is enjoying her new room in the children's wing! So AWESOME. She is drinking and eating again without issues hooray! They let her eat real food, and she's kept it down. After a week hiatus, she settled back into food <sarcasm>nice and slow</sarcasm>, so she had mashed potatoes, apple pie, and a hamburger.   Heather reports that she bit into the hamburger and said "This is sooooo delicious!"   She promptly fell back asleep mid-meal -- her little body is very tired. She is very coherent now that she's off the loopy medicine, and enjoyed watching "Good Luck Charlie" on Heather's iPod.   She's a bit old hat when it comes to hospital stays, but she is annoyed by the additional cords etc due to the hemodialysis. She's limited to 3 sippy cups per day (roughly one liter) as her kidneys are not yet producing urine, and that is how much fluid they are taking out of her system via hemodialysis. She's tired, but very much herself. 

A close up shot of a hemodialysis machine

Here is a picture of a plasmapheresis machine I forgot to post yesterday.

•  Heather had the chance to talk to more doctors, and here are the bits and pieces that I picked up on that I think y'all'll (Like my new southern contraction? Impressive right?) be interested in that I also remember:   We've been told not to beat ourselves up, or her pediatrician about the whole dehydration issue -- and have been told (I think by the toxic disease specialist) that her kidney issues would have happened regardless. I don't know if I buy that, but OK.
• We've been told (I think by the infectious disease doc?) that it is the first layer of tissue that is to blame (for failure, bleeding, etc). Collagen resides in deeper layers therefore her OI has no relevance in that aspect.
   
• We're waiting for test results that won't come in until Friday (12/7/2012) to get many of the answers we seek, but there are a few key theories:
   
  • Option 1: It was a bug... Such as E Coli., Shigella, or Salmonella and her kidney function is going to quickly bounce back. I call this the unicorn and rainbows option. Heather is more purposeful in her naming convention and she calls this the prayers of faith option.
     
  • Option 2: It was a bug... and her kidney function is not going to bounce back quickly... perhaps not at all. Regrettably ***spoiler alert*** this is the front-runner. More on that later.
     
  • Option 3: It was not a bug, but genetic and it was somehow triggered -- such as male pattern baldness, but instead of making you handsome, your blood fills with toxins (also known as electrolytes--too much of a good thing, just like hair--is it just me, or can you see the crazy parallelism?). The tests we're waiting for details on are to confirm/debunk this theory.

Note: If either bug theory is right, it then begs the question, how did she acquire it? Why didn't the rest of us? Her piano teacher was hospitalized with E Coli, but they hadn't seen each other in almost two weeks by the time Evie was symptomatic, so that doesn't have any bearing on the issue.

Given the fact that she's able to eat a hamburger of all things days after she couldn't keep down hardly anything for a week, Option 3 seems infeasible to me, but I'm a computer scientist Jim, not a doctor, so what do I know?
 
Option 2 seems the frontrunner because of the shape she was in by the time she got to the hospital, and the fact that her kidneys continue to produce no urine. That means we'll be looking at possible options but there is a very real chance that we'll be looking at dialysis long term. In that case she'd need a permanent access which requires surgery, and she'd be spending 3 days a week for 3-4 hours at wherever our local dialysis center is... I'm guessing one should be close since we live in a retirement community, so hooray for that! It makes her very tired, which is a big reason she is sleeping a lot. Home dialysis equipment would be better because it could be done at night while she sleeps--perhaps our insurance company would help foot the bill, but even so it would be cost-prohibitive.
 
So they have tried twice already to confirm that it was E-Coli, but the results were negative. The current theory is that she had one of those bugs, but enough time has passed that the bug is gone, and therefore the test should come up as negative. I'd guess Salmonella over E Coli, but it really doesn't matter.
 
So the short of it: let's say it started with salmonella and led to hemolytic-uremic syndrome, which was complicated by thrombocytopenia and from her symptoms one could argue hemolytic anemia and uremia were other complicating factors. From there it was a short walk to acute tubular necrosis and although I haven't heard them use the term, the end result has been acute renal failure.

Is that enough doctor speak for you? It certainly is for me.

In šāʾ Allāh -- I pray that my little fighter's kidneys can bounce back from this.

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.