One Year Ago Today: 01/30-31/2013 - The Exclusive 8 & Under Medicare Crowd

(01/30-31/2013, Wednesday & Thursday) Evie:

• Is not consuming enough calories -- she does not eat without external motivation.
• Does not require oxygen (has not had enough fluid intake to challenge this.)
• Has had blood sugars of 160+ since we started keeping track again.
• Continues to be exhausted because of:
  • Dialysis itself
  • The build-up of toxins in the bloodstream between dialysis appointments
  • Side effects of her medication
  • Glucose/insulin imbalance
  • Insufficient caloric intake
  • Lack of deep restful sleep
  • She's sick.
• Has been officially declared to have Stage 5 Kidney Failure (you guessed it, there are only 5 stages.) I've been told that on the plus side, this means that at the ripe age of 8, she qualifies for Medicare. 
  
  

  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.

One Year Ago Today: 01/10/2013 - Baby Steps Across the Room

(01/10/2013, Thursday) Today was a non-dialysis day for Evie, so we slept in until nearly 1000. After that, it was a non-stop stream of doctors, nurses, physical therapists, nutritionist, child psychologists, etc.

As rough as it is transitioning to home life with a bit of work peppered in there, transitioning back to hospital living was more tough. The doctors have been used to me being a constant figure that is fairly up-to-speed on things, and after having been gone for four days, I no longer had a good bead on where things were at. It was like high school physics class all over again:

Challenge: "What (insert random question here I should know the answer to)?"
Response: "I don't know."

Since Evie's TPN was turned off a few days prior, there is now concern that she isn't getting sufficient liquid or nutrition, so Thursday -- Saturday it is my task to document everything she eats and drinks. The conversation with her nutritionist was more confusing than it was helpful--I *SO* wish I'd followed through with the impulse to make the nutritionist order Evie's brunch that day. Any attempt to acquire "appropriate" food by ordering through hospital food services is laughable.

PT helped Evie replicate her success from a few days prior, and she crossed the room using her walker twice! The first time she cried. The second time her joints had warmed up a little, and although she was clearly pained, she gritted her teeth, and got it done without a peep.

Now that we aren't in Pediatric ICU, we don't often get to have the x-ray come to bedside, so we made a trip down to the basement to take a few good shots of her chest (checking on her lungs and the fluid which surrounds her heart.) After that, we came upstairs and removed her PICC line, which had been in long enough that there were worries of possible infection. With all that going on, we didn't make it to school, but it turns out it may not have happened anyhow, as all but one of the teachers were out with the flu (and they'd all had flu shots--so encouraging!)

The biggest news of the day is that she has crossed the line of demarcation and is no longer insulin dependent. Shutting off her TPN seems to have resolved the matter. The rest of the day was uneventful, but due to a late nap we didn't manage to get to bed until after 2200.

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.