Evie lost a tremendous amount of blood today between several violently bloody bowel movements as well as vomiting-- both of which have been dominantly blood and clotted blood. She did not express that she was in any pain today which actually worries us quite a bit: Evie's either gotten tired of telling us (bad) or has gotten used to the pain to the point that she is desensitized to it (worse).
The day started by waking up around 0600 to the discovery that Evie had a bloody nose while wearing a mask (on BiPAP) where there is nowhere for the blood to drain out. It's unclear to me how much blood there was as I wasn't fully cognizant at first and the nurses acted quickly. Plenty of blood got on her gown. The air from the BiPAP has 0% humidity, which likely led to the bloody nose. It turned out to be a good thing though, as it made it possible for us to also discover the blood she'd voided.
At this point we were still planning on sticking with our original plan, which was to skip dialysis today, and do it tomorrow. Around 1000 we moved Evie to a chair so that she could enjoy some time away from her bed. Around 1030 she vomited out a volume of what seemed to be nothing but blood. My theory is that this may have been from drainage during the middle of the night from her bloody nose, but it is hard to say. At this point, it was obvious she'd need at least one transfusion, and because of that need, she would also require dialysis due to the additional fluid.
Evie's mom and grandpa arrived around noon and since we're only supposed to have 2 visitors in the room at any given time, I left to go eat. I came back a half our later, they told me I'd missed the excitement as she'd thrown up again. This time it was a much smaller amount, and only laced with blood--it primarily consisted of stomach acid, and phlegm from her lungs. I left again to go shower (upstairs in the NICU), and by the time I came back a half hour later they said, "You missed the excitement." --This time they'd discovered more volumes of blood had been voided, to the point that it had soaked and stained the chair Evie was sitting on.
She began dialysis. During dialysis, they gave Evie two units of blood (maybe more?) Meanwhile I left the room to do laundry. I soon came back and ignored the 2 visitor limit. The nurses did not seem to feel that it was a good time to wag fingers at me, so the rule went unenforced. After dialysis she got extra platelets. I believe there was more voiding of blood, and possibly more vomit, but I can't recall for certain. The total amount of blood she's had transfused up to this point is roughly half of what her body can hold.
Evie slept through large portions of the day--between the loss of blood, her pneumonia induced labored breathing, and everything else, she's just tired. She struggled to get enough oxygen without being on the BiPAP during the day, so we switched her over to a nasal cannula setup which worked very well for her as she was able to ditch the mask. At nighttime though she has to go back to the BiPAP.
Without something more specific to blame at this point, the doctors are simply referring to her GI bleed as Acute Colitis. They suspect that this is due to her HUS being aggravated by the pneumonia, and thus we've rekindled flames that we'd hoped would never light again. It is all supposition really, as HUS isn't supposed to have relapses... it seems to me that we are muddying the waters between HUS and aHUS (not that the line of demarcation was clear to begin with.
We finished our "decorations for the newborns" project today. Evie also "watched" a couple movies and a few short Christmas videos online. Mr. & Mrs. Claus and an elf stopped by and asked her what she wanted for Christmas--Her laconic response? Stompeez. One of her nurses has taken it upon herself to locate and purchase some for her. Everyone here is so kind, and they all adore Evie. We enjoyed Skyping with various family members, and had a brief bit of energy at the end of the day where she played a few songs on her keyboard from Rec Therapy for Grandma and Grandpa (via Skype), as well as a song for several of the nurses and doctors.
Due to all the extra liquid (via transfusion) we'll need to do dialysis again on Monday (12/24/2012), the plus side is that this means we shouldn't need to do it on Christmas.
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