One Year Ago Today: 12/9/2012 - Food, Glorious Food! "So Lucky" & Life Inversion

(12/9/2012, Sunday) Let's talk about life experiences, shall we? Have you ever had something in your life that was going so right it was hard to believe, and then what I'll call "life inversion" happens--it becomes easy to believe that it isn't so right, so much so that it is difficult to conceive of it ever having been right--it seems impossible to connect the two moments in time together? For me, this pretty much describes a particular relationship my sophomore year of high school. Unfortunately, it also describes yesterday (Sunday). The day started off very well. Evie had some pain in the early morning hours, but her nurse was very responsive in helping manage it, as well as protecting her from the poking and prodding that tends to happen, so that she was able to sleep in until almost 0900.

When Evie woke, I checked her mouth because she was complaining of pain from her orthodontia appliance. Overnight it had gone from irritation to two visible cuts, one on each side (left and right) of her tongue. We tried to make her feel better with a dose of magic mouthwash, but it didn't really help. We're going to try her Aunt's idea and acquire some denture wax to cover the offending areas... I tentatively planned to sneak away in the afternoon to acquire some.

Very early on in the day we were given the green light for drinking! Evie was so happy. We even had apple juice instead of water. We were limited to 2 oz. per hour, but when you've been off fluids by mouth for so long, 2 oz. an hour seems to be an unbelievable boon. Shortly after our first drink we had what is typically a daily echo-cardiogram. Before we heard official results, we were suspended from fluids. :-(

We received official word that her echo-cardiogram results were very good. In nearly every measurable way her heart had returned to normal with only mild dysfunction and mild dilation of the left ventricle. The reason we were suspended from fluids is because there was fluid around the heart. This wasn't a showstopper, it has been the case before -- we currently manage that via the dialysis -- but there was more there than last time, which is why they were a bit more concerned.

A bit later we were again cleared for fluids -- and Evie was allowed to eat Jello! She was incredibly happy. She skyped with grandparents, and took a nap. Meanwhile, her new dialysis machine was showing signs of clogging already. This was bad and good -- perhaps it meant that she was healthy enough for heparin (blood thinner). After discussion they decided to use a bit of heparin in the machine itself, of course, some of the heparin would find its way to her, but most of it would stay within the filter to stop clotting.

At about 1330, Evie's new dialysis machine stopped working. In the fasted turnaround that we have had yet, she was back on dialysis only an hour later. We started reading through the cards her class at school had sent to her. I had to explain why a classmate would write, "You're so lucky!" in one of her cards. This life is really all about perspective. A bit later, we played the new game her Aunt sent her against a few of the nurses. Evie was on a bit of pain medication and was very drowsy, but we still managed to pull out a victory (Us vs. Nurses)

Unfortunately the new dialysis machine stopped working at 1800. When the continuous dialysis machine crashes unexpectedly it means there isn't one ready immediately to put her back on it again. In this particular case, Evie wasn't back on dialysis until closer to 2100. All this is problematic for several reasons. First, the toxins in her blood immediately reach levels which make her feel more ill--the more time passes, the worse she gets. Second, she loses about 90 cc's of blood each time it happens.

In a 24 hour period, Evie had 3 dialysis machines go offline, so she lost about 270 ml's of blood. If I've done the math correctly, that was about 20% of her total blood supply, not even counting the multiple times a day blood-work is drawn to check her levels. Gratefully, she'd had an infusion ordered after the first one went offline, but the others went offline in such rapid succession that the lost blood had not been able to be replaced prior to them initiating dialysis again at 2100 or so.

The impact was immediate. Evie's pulse quickly escalated until it was registering over 190 (keep in mind that 90 is average, 70-110 is the typical range for her age.) Inversely her blood pressure dropped to the point that she was mid 40's over high 20's. For someone Evie's size, that should be doubled at least. Things were very dicey for a few hours and were complicated by glucose/insulin issues, complications arising from the fluid around her heart, and not having enough lines to administer necessary medication/fluid through. The low point was having to hold my little girl still while they attempted to put an IV into her neck without using any numbing cream, or even allowing me the opportunity to calm Evie down from other events, or to simply let her know what was about to happen because they were in such a rush to administer additional fluid/medication. <sarcasm>Shockingly</sarcasm>, it didn't work, but between the stresses on her body and emotions, it put Evie into a rather dangerous place. Amongst other things she had her 2nd echo-cardiogram of the day and it wasn't until 0100 that a she had stabilized to the point that we could attempt a blood transfusion.

Sadly, the only IV line available at this time was in a small vein on her left thumb, and every time we'd used it for blood transfusion it would make her cry with pain -- but it was our only option, and she had to have the blood. She had finally drifted off to sleep about 30 minutes prior, so we stealthily began the transfusion. The pain woke her up about 30 minutes into it, so for the next hour and a half I did everything I could to distract her from the pain. At 0300, we completed the transfusion--good thing too, as she was wild with pain and sleep deprivation--I don't think she could have taken anything else.

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.