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
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'.
******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*****
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.
