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: 01/26/2013 - NG Tube The 2nd Step Closer to Home

(01/26/2013, Saturday) Last night was rough. The peak occurred around 0200 when we suffered a bout of very liquidous diarrhea which necessitated the lights being turned on and a partial bedding change. It was likely more traumatizing to me than her as it brought back memories of roughly nine weeks ago when my otherwise healthy child began having similar issues, namely vomiting, loss of appetite, and violent diarrhea. I do not believe she is having a recurrence, but with how hard the last few days have been, I'm not quite in the stoic place that I like to find myself in times of trial.

I don't have much to provide for an update today. My Evie bear was awake for about four hours total today. She didn't wake up until sometime after 1100. Meanwhile, gratefully, a different nephrologist (kidney doctor) had come on shift. I spent over an hour recounting the events of the last week since she'd been here. Then Heather woke up and we re-hashed a few of the more important topics for nearly another hour. My heart flows with gratitude for this doctor who actually wanted to hear me out.

Once Evie was awake, she ate a half cup of marshmallow mateys and declared she was full. She had a nap for a few hours, and when she woke up, we placed an NG tube (feeding tube). (You're welcome to hit YouTube if you want to see what its like--if watching it makes you queezy, just imagine experiencing it personally!) Not surprisingly Evie didn't enjoy it, but she held very still, and it was done and over before she had a chance to get worked up. She ate a popsicle and was determined to make it to the playroom for a few minutes, in spite of near exhaustion. The three of us played Qwirkle, then came back to the room.

Heather then left to reclaim the rest of our kids from neighbors, and church members homes. So grateful for people who step in to help us stay afloat. Heather had driven up Friday morning and planned to go home that afternoon, but the procedure had run long, and it snowed here so the road home was a parking lot, so she stayed. (Well, they call it snow here -- it was cold, and there were ice particles in the air.) I don't know if Evie was awake enough of the time to appreciate having both of us here for a whole day and a half, but it meant the world to me--and left me in a better place.

Evie ate another popsicle while I read her part one of "The Ordinary Princess", and then promptly fell asleep. Her feeding tube has been running since around 1730. It's now 2030 and I'm not sure if I should try to wake her up, or let her continue to sleep. Between the sore throat, the sore stomach, and the gauntlet that was the last three days, I think I'll vote for sleep. Here's to hoping that when tomorrow morning dawns, she'll again be ready to face it with determination.

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: 01/24/2013 - Rough Day

(01/24/2013, Thursday)

Today was hell.

I'm not going to drag you all through the emotional cesspool that was our day--rather I'll just shift perspective a bit--Evie:

• Isn't paralyzed.
• Appears to have no lasting heart issues.
• Has no brain damage. (Probably unnecessarily tying things in here, but she's not a Ute fan or a Pittsburgh fan.)
• Is more like Cinderella than her stepsisters Drizella and Anastasia (she's kind, caring, and helpful.)
• In spite of everything, she still trusts me.
• More importantly, she still trusts her Heavenly Father.
• Has not given up.

So today was okay.


Evie:

• Is not on a feeding tube, and is not consuming nor retaining enough calories.
• Currently weighs 17.9 kilograms, or 39.5 lbs.
• Will endure her 3rd day in a row of dialysis from 0700-1100 Friday, with the current total of this streak being 2.2 Liters removed.
• Is not currently on oxygen, as the theory is that if we get her and keep her "dry enough" she won't need it.
• Is physically exhausted, and would sleep the majority of the day if left undisturbed.
• Has no appetite. (In spite of the appetite stimulant she's been receiving, which has a side-affect of potentially causing "night-terrors")
• Will have surgery tomorrow after dialysis (most likely around noon) for peritoneal dialysis access.

Things to Hope and/or Pray for

• That she regains her appetite, and her ability to keep her food down.
• That we'll adequately resolve the oxygenation/breathing issues.
• Better doctor/patient family relations/communication
• Penetration of the bureaucracy.

I realize that my first set of bullets may have concerned you, so please, let me clarify: I was trying to get myself in a more positive mindset. The first set of bullets are all things that are not an issue, nor have they been. Nothing traumatic brain/heart/nerve system happened... this was just my poorly written way of saying, "We'll, at least we don't have these problems."

Make sense? Sorry if I gave you undue cause for concern.

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.