0600 -- Day begins as the "continuous dialysis machine" fails, having suffered an unrecoverable error, known in all the inner circles as the notorious "Error #2" (If you didn't catch the sarcasm there, no one seems to know what "Error #2" is... gotta love helpful failure messages, particularly when you don't have one that is.) Regardless, this meant that we needed yet another dialysis machine. Y'all probably aren't keeping track, but these things are supposed to run for 72 hours, and then put the 90ml's of blood they have in them at any given moment back into my little girl. It is Evie's experience that they last less than 20 hours each on average, and they always keep the blood.
0730 -- Another dialysis machine is brought into the room. Luckily it is discovered to be useless just prior to turning it on to have Evie bleed into it, so it got sent away to be repaired and Evie did not need yet an additional transfusion just for that.
0800 -- Another dialysis machine shows up. This one appears serviceable.
0900--Evie is again on "continuous dialysis"
0930--Echocardiogram (which began at 0900) completes... Evie and I view it as an important test today, because if the results are good enough, it may mean the advent of solid food!
1300--We eat crackers. Big mess in the bed, crumbs everywhere, but we've officially rejoined the ranks of the exclusive solid eaters club, so it is totally worth it. Evie reports that The hospital graham crackers are the kin of cheap corrugated cardboard -- nonetheless they were voraciously gobbled. Along with being excited for Evie about eating in general I'm excited with what I'm told are the results of the echocardiogram -- her heart appears normal. Her bloodwork reveals that her troponin is 0.648. It has been as high as 3.5, and the limit for normal is considered to be 0.5. Consider the following: "Increased troponin levels may also be seen in people with certain chronic health conditions such as heart failure, long-term kidney disease, and stable heart disease. Increased levels in these and other conditions can be a sign that a patient is at increased risk for bad outcomes." So the fact that her troponin has decreased significantly is very nice.
1400--We order toast from the cafeteria, and scrape on an ultra thin layer of peanut butter -- only enough to subliminally remind you of a peanut butter sandwich while you eat it, but not enough to taste it.
1700--Mashed potatoes and grilled vegetables for dinner, along with a bit of grilled chicken.
2300--Slow and steady wins the race: during our 3rd wave effort, we finish dinner.
0500--There's always room for Jello.
Other events of today include:
- Playing Wii with a volunteer from recreational therapy. Yeah,
unfortunately this made her quite sad -- turns out Evie's legendary jump-shot on Wii Sports Resort basketball is a bit limited when her arms are lit up by IV's.
Time does heal wounds though, as later in the day she told me this was
her favorite thing today.
- A visit from the psychologists to make sure we're both handling the experience in a healthy way.
- Opening gifts from Evie's aunt whose thoughtfulness helped us get out of sad places.
The night was rough as I expected it to be. The poor little thing can't get comfortable, and she wakes up due to blood sugar checks, and random alarms so easily that we're both in bad shape when it comes to sleep deprivation. At this point, I think we'll just let go of social norms, and plan on sleeping whenever we manage to pass out, and be awake whenever we can't, and primarily be time of day agnostic. We're doing our best to take care of each other and be accepting of our limitations.
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