One Year Ago Today: 12/29/2012 - Calm Day, Crazy (Insane) Night

(12/29/2012, Saturday) We have heard from the doctors early in the morning that they did not plan to do a colonoscopy or a surgery today. Evie is not stable enough, and since she didn't have her first stool (which was a bloody stool) today until around 1100, they are hoping that the bleeding is slowing. If something changes, they stand at the ready to take action.

She received one unit of blood this morning and successfully completed plasmapheresis by 1230 at which point the dialysis technician began setting up. She received another unit of blood during dialysis. If nothing else this borrowed blood clots a great deal faster than her own, so we'll see. She enjoyed multiple ice chips in the morning and did not throw them up, so hooray for that. In other news, the last of our family who drove across country to take care of our other kids so that Heather could spend more time here with Evie had to go home this afternoon. My gratitude will never compensate for their sacrifice -- I don't know what we would have done without their help.

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Dialysis completed around 1600. We enjoyed Skyping into an extended family party shortly after that--I suspect we were a bit of an interruption. It was good to see cousins, even via Skype, as it has been years for me. Evie enjoyed seeing a few of her cousins as well as her 2^nd cousins. Afterwards we had a bath, and then Skyped with Heather and the other kids. We also enjoyed playing a speed card game "blink" which I think we'll really enjoy once Evie gets her energy back. At 2000, Evie was sleeping--pretty much ready to be down for the night, having had only the singular stool today around 1100. (Around 100 ml's of blood loss.) By the end of the day, she'd had 6 units of insulin, and was down to 1.5 liters of oxygen at 50%.

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And then the other shoe dropped.

Evie woke up to pass a bloody stool at 2030. About 250 ml's of blood. She immediately fell asleep. At 2115, she vomited up what little water she'd gotten from a few ice chips at 2030. She fell asleep again. At 2130 she woke up to pass another bloody stool, roughly 300 ml's. She immediately fell asleep. I rushed to the 4^th floor to get a quick shower as I desperately needed one, and I never know when my next hygienic opportunity will be. She was still asleep when I returned at 2200. I passed out as well.

By 2330 I awoke and we took care of another bloody stool, this one only 50 ml's. Evie didn't really even wake up for this one. We put in an order for two more units of blood for transfusion, and meanwhile grabbed blood samples to check her H&H (Hemoglobin and Hematocrit). In case anyone is interested here are today's numbers:

Time:	Hemoglobin:	Hematocrit:	Comments:
0400	6.4	17.6	Prior to any transfusion.
1200	8.4	25.5	After 1 transfusion, and a relatively light bloody stool.
2000	11.3	31.3	After two transfusions, prior to later stools.
2400	8.2	21.3	Post heavier bloody stools, prior 3rd transfusion

It is now 0130 and we are starting transfusion #3. She should finish #3 by 0330 local. We'll hold #4 until after her morning blood work at 0400 verifies that she needs it. If you'd asked me at 2000 whether I thought we'd have a surgery on Sunday, I'd have said, "No, things are looking up."--Tonight serves as a good microcosm of this whole ordeal because at this point, I think a Sunday surgery (or at the very least, colonoscopy) is quite probable, if not imminent come daylight.

Thank you for your prayers of faith, as well as your love and support.

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.