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: 01/19/2013 - Probably Need a Transplant

(01/19/2013, Saturday) Early this morning I met with one of Evie's nephrologists (kidney doctor) and conferenced Heather in via Skype. We talked through several of the issues (having the surgery for a peritoneal dialysis catheter, possibly placing an NG-Tube, etc), and we officially discussed kidney transplant for the first time. Wa-hoo.

Two hours later, the family came to visit today although without Evie's younger sister (who was well enough to stay at a friend's house, but certainly not germ-free enough that it would be worth it to risk having her near Evie.) Having the rest of the family visit did Evie a lot of good today. Evie also enjoyed (she ate!) the homemade food that mom brought (Stroganoff & Chocolate Peanut Butter Chip Cookies).

Before Evie became ill, she was 44 lbs. She was weighed minutes before she had her seizure the day she arrived here, 7 weeks ago Sunday afternoon, and weighed 40 lbs. I'd say Evie doesn't have much more weight to lose, even though she is heavier (41.4 lbs.) than she was when she checked in. This is because when she checked in, she was severely dehydrated, but not enough time had passed that muscle or bone loss could have played much of a factor. If Evie dips below 40 lbs now, it would most certainly be the result of muscle and bone loss, not dehydration.

My last post probably didn't make much sense because I tend to be writing when I'm overtired. I do think I pushed her too hard doing homework on Wednesday, and doing physical therapy things on Thursday. The whole eating thing is stressful, and while I had good intentions, the conversations she and I had on Thursday night and Friday morning did nothing to make it less hard, if anything, I did a brilliant job of traumatizing her, which left both of us in a bad place on Friday.

Every decision made regarding her care is difficult. We don't want Evie to be insulin dependent, so we don't give her the one thing that has helped her effusion shrink in the past (steroid). We don't want to hurt her kidneys (which according to the test have no significant chance of recovery) so we don't give her ibuprofen, which may or may not help with the effusion. They started giving her aspirin, because neither of the other options sounded good -- but oh, yeah, this is the girl who needed half of her blood swapped out in 24 hours, so thinning her blood doesn't quite seem brilliant, does it? So today they killed the Aspirin, and went back to Ibuprofen, but a lower dose. Is that wise? It depends on if you believe in miracles. If you think her kidneys still have a chance of recovering, it is a dumb move. I'd argue though that if you have the faith to ask for functioning kidneys, surely that can overcome a little Vitamin I.

Last but not least, I'll share a couple snapshots of Evie's journey thus far. The time lapse is almost exactly 8 years. She's 10 months old in the first photo, and 3 months shy of 9 in the second.

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: 01/17-18/2013 - Pesky Pericardial-Effusion and PT: We Done Overdid It.

(01/17-18/2013, Thursday & Friday)
I know it wouldn't work, but the logical/sensible side of me checked out a long time ago. Have you ever had the fleeting thought that if you did everything backwards, perhaps you could have 20/20 foresight instead of hindsight? At 0200, it seems like a perfectly credible idea, just sayin'.

The last two days have been rough. Evie pushed herself rather hard while she was feeling well, and I didn't stop her. If anything, I was Mr. Encouragement coupled with Uncle Instigator. Thursday morning I let her use her walker to walk much too far. It seemed like amazing progress at the time -- Evie was in a great mood, and thanks to "Vitamin I" (Ibuprofen) she was feeling better than she had in weeks.

Here she is feeling totally chipper in the playroom.

The purpose of the Vitamin I is to reduce swelling -- In Evie's case we were hoping it would cause a decrease in the size of the effusion (liquid) surrounding her heart. Vitamin I also does wonders for joint pain which Evie has always had plenty of, but has typically just dealt with it in the past--that pain is much more severe during this hospitalization because of how long she's been immobile. The downside of Vitamin I is that it is rough on your kidneys, even when you are healthy. (So I s'pose I need to change my ways, and stop considering it as a post workout vitamin.) They'd hoped it wouldn't impact Evie much, but while it made her feel like a million bucks, they say her urine production tanked, so she was only on it for a couple days.

The next alternative would have been to give her a steroid, but that would have made Evie insulin dependent again, which we'd desperately like to avoid. The only other alternative I've heard is to try to drain the effusion, but it is in a difficult area and they don't want to risk that as long as it isn't affecting her heart's ability to squeeze. Unfortunately, the effusion does have a rather adverse impact on Evie's ability to breathe.  The fallout from quitting the Vitam** * Ibuprofen is that she'd gotten used to not having joint pain, and now it is back with a vengeance thanks to the all the exercise she got while she was feeling well.

A quick dash of good news: Our ex-girlfriend the cough moved on to other fish in the sea, and we haven't heard or seen her in two days -- here's to hoping that she doesn't come back for anything she may have left behind.

More good news: I think the flu has moved on from the homefront too. Bad news: it sounds as though Evie's younger sister caught something else while at school on Friday. What I don't get is how these things manage to spread in NC -- it isn't -15 outside, it hits the 60's and 70's more frequently than I expect it to, so how come school is such a disease factory? Just sayin'.

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******At this point I fell asleep at the keyboard, so I apologize for the delayed update, but at least I didn't keep the several pages worth of mistakenly pressed keys*****

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And I'm back. So Evie was on oxygen prior to dialysis Friday. Lately dialysis has given her a reprieve from breathing/oxygenation issues for about a day and a half, and then the night before dialysis, she requires oxygen. Friday was different though. She had dialysis Friday afternoon--they removed 800 ml's and finished around 1800. By 2200, she was already having problems breathing and as a result she had to get back on oxygen.

The effusion (liquid) surrounding her heart is causing her to not get enough sleep, which impacts the rest of her recovery. She sleeps until 1000, and doesn't tend to eat her first meal until 1100. That means she really only eats twice a day. And what she does eat is so far not enough--she is losing more weight. It is very possible that within the next few days she'll have to get a feeding tube.

The current expectation is that we'll be here at the hospital for another two weeks or so. If her urine production isn't able to ramp up, she'll have a peritoneal dialysis access put in.

Evie:

• Had 0.8 liters of fluid removed friday via dialysis
• Is back on oxygen, and requires it 24 hours a day.
• Is cough free
• Sleeping well? No. If I stay awake long enough to watch her, I can see that I was naive to think so.
• Is not getting enough calories in, and is losing weight...     It isn't for lack of trying, last night she had a ¹/₂ a piece of lasagna, ¹/₂ a quesadilla, most of a large piece of cheesecake, and most of a piece of chocolate pie. Problem, she didn't eat much the rest of the day.
• Weighs 18.8 kilograms, or 41.4 pounds
• Is able to move about well short distances with her walker, although at times she's too fatigued to do so. If her food intake doesn't pick up, the exercise will be detrimental as she has no fat to burn, so her body will start robbing what little muscle she has left.

In short, she could use more prayers on her behalf.

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.