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: 01/21/2013 - Recognizing the Realities of End Stage Renal Disease

(01/21/2013, Monday)

DISCLAIMER: This post is not intended to be a pity party (I certainly hope it doesn't seem like one.) Rather, it is just my thoughts and shifting perspective.)

Evie weighed 18.1 kilograms (39.9 lbs) at the end of today's dialysis, wherein, as I am told they removed 1.5 liters of fluid (12 hours previously that had removed 0.8). I don't think I have to tell you if you've been reading any of these updates that this isn't good. That being said, she feels much better having had all that fluid gone, and was decidedly vivacious tonight as we watched a movie.

I keep telling myself if we can just overcome the current struggles, the rest of this will be easy. I do the same thing when I exercise (at least I used to, back in the day when I exercised) -- sometimes you know that you are effectively lying to yourself... "Just 2 more minutes at 8 mph, then it'll be easy."--that sort of thing. Sometimes you know your plan is to increase the elevation, or to crank it up another 0.5 mph, but you convince yourself that things will be better in two minutes anyway. This whole ordeal has been a bit like that, meanwhile focusing on the end target the whole time. "We just need to fix _________ and then within a few days we should be able to go home, and then things will become more normal."--I know that it won't be normal, but more normal is acceptable.

However, today was a bit hard with its heart aching, gut wrenching, bone crushing (loss) moments. Like watching a slideshow of pictures from Evie's life so far, and seeing:

• A: The number of pictures that involved hospitalization (related to her Osteogenesis Imperfecta)
• B: The number of pictures she was having fun in water (lakes, rivers, ocean) that she is not allowed to be in any more.

I am adept at handling item A. I've known her since she was in the belly forming, and I knew her journey would not be light on doctor and hospital visits. But seeing pictures of her enjoying the water, and knowing that without additional divine intervention she simply can't do it anymore hurts. It doesn't help that I spent time talking with one of the more knowledgeable dialysis nurses Sunday night / Monday morning about the potential riskiness of swimming even in treated water.


Sad.


But this is a new limitation that I've known about for weeks, and am mostly adjusted to. Evie and I talked about it at length over a month ago.

Although I tried my best to help her stave off muscle and bone loss, it is clear that it has occurred, and that it is significant. She is emaciated, and dwindling. She will likely have a feeding tube placed before Tuesday is over. I guess I've been so worried about the effects of long term immobilization (today marks 8 weeks of illness), that I hadn't considered the impact of kidney failure itself. In the last day or so, I've realized just how damaging kidney failure is to bones. Bad news. If Evie were a camel, she'd need to carry something lighter than straw.

The thing that really has me feeling as though I have a pit of despair in my stomach though was having my wife kindly share with me knowledge that I just hadn't been tracking. Here's an excerpt from "CURRENT Diagnosis & Treatment Nephrology & Hypertension", Chapter 55 on Pregnancy & Renal Disease:

If you'd like more information, choose your own adventure:

• Light Reading: The National Kidney Foundation
• Heavy Reading: UpToDate

Somehow, I'd missed this, although I'm sure on the fringe it may have been casually discussed... In my mind it was a lingering wonder... "How will kidney failure impact her adult life?" I've still been in triage mode, still trying to endure 8 mph. Grant you, some may say that I am either naive or hopefully optimistic to simply assume that adult life is guaranteed. Fair enough, call me either. I operate under more of a guise of a plan than a real plan... As I struggle through our run, regardless of how difficult this information is, it doesn't change blessings which are hers to claim. God has a plan, and that is all that matters. We'll be okay so long as we pay attention and follow it.

So I keep my hand to the plow. No need to look over my shoulder--I must cut a straight row. I focus my eyes on the eternal target, and press forward.

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: 12/31/2012 - The Difference a Day Makes

(12/31/2012, Monday) Evie slept well last night, but her sleep was cut short this morning by the sliding door of her room coming off the track. Between me trying to fix it with my bare hands, and the maintenance guy coming to fix it with the necessary tools, she woke up too early because of the noise.

By 0800, we began plasmapheresis, which was done around 1100. During the course of which, I had a chance to have a lengthy discussion with one of her nephrologists. Discussion highlights include:

• After today, no more plasmapheresis (unless something changes, again.)
• No dialysis today.
• Convert the continuous Nexium drip to a twice a day IV (Nexium doesn't just help with acid reflux -- the magic purple pill also helps your GI tract heal itself.
• No more assisted breathing -- we're back on room air :-)
• It is the belief of the nephrologist that Evie is considered most certainly to be in the HUS crowd, not aHUS... we've done a few things (primarily the Lamborghini Juice and Plasmapheresis) which are typically reserved for an aHUS patient, but they have been used elsewhere (namely Germany) to great effect for regular old HUS folk.
• It is also the belief of the nephrologist that Evie's GI bleed is also par for the course for a patient with a severe case of HUS and she believes that Evie clearly falls into this category.
• We're still in "Wait and See" mode when it comes to her GI bleeding but the Nephrologist feels like if we still haven't seen anything (bloody stool-wise) by the time dialysis is done tomorrow, we may be able to move back to the regular floor (out of PICU) tomorrow!!!
• Green light for clear liquids today, in very small quantities.
• We again discussed how very badly Evie needs time with the Physical Therapists (because of her OI.)
• We discussed how long Evie will likely require dialysis. The nephrologist is hopeful that she may not require dialysis, and or a transplant later in life, but hangs to the hope that instead enough kidney function will return that she could filter her own blood and produce urine. Even if that becomes reality she will likely spend the rest of her life taking medication for regulating blood pressure and other things that her kidneys will likely not be capable of doing any more.
• We also discussed the possibility of several more weeks in the hospital, or potentially living somewhere nearby and coming to the hospital 3 times a week. (Essentially trying to decide between doing peritoneal dialysis, and staying with standard hemodialysis.)

The rest of our day consisted of working with physical therapists and recreational therapists. We got to put her in a wheelchair and take her on a walk today before Heather had to leave. We had to stay in PICU though, and she is itching to make it back to the playroom. She enjoyed the food she got to eat, but struggles with the limitations of type and quantity. It is really important that we don't go too fast though, as too much or too complex of food in her belly could re-aggravate both her pancreatitis and possibly more GI bleeding.

The gastroenterologists and pediatric surgeons seem to still be interested in performing a colonoscopy to take a look at things that yesterday's procedure couldn't view... we'll see if and when that happens. It has been 24 hours since we had a bloody stool, and at the last check of her hemoglobin and hematacrit, both were stable (and had raised slightly) compared to yesterday after surgery -- so everything is looking up. Let's all hope it isn't another peak in the rollercoaster, but rather just another vista toward the top of the mountain.

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.