One Year Ago Today: 12/21/2012 - Exhaustion, GI Bleed & Possible C-Diff Infection

(12/21/2012, Friday) Evie slept a great deal today. Her little body is struggling and the good fight is getting to be physically exhausting for her. She slept quite well through the night, with the exception of waking me up at about 0320 in the morning. She'd had a very traumatic bowel movement -- more blood than diarrhea, much more liquid than solid, and large enough in volume to warrant an early morning transfusion. She went on to have four or five more heavily bloody bowel movements throughout the day resulting in an additional transfusion and extra platelets. The doctors are adequately certain that the blood is coming from her gastrointestinal (GI) tract.

[Bloody bowel movements have been nearly daily occurrences ever since Evie first fell ill. At the beginning we didn't recognize that what was coming out was blood (it was "old blood" and had an appearance more similar to coffee grounds.) I regret not having documented it more during the first three weeks of our hospital stay.  I was trying to avoid the banality of it all but in hindsight, I wish I'd tracked it better because now, the severity of the problem is significantly amplified. Evie has had so many other problems which have had to take precedence, but at this stage, the volume of blood which she is losing brings this issue to the forefront.]

She's had multiple x-rays today between her lungs and her stomach (no effusions detected==good). The cause is as of yet undetermined -- they're not quite ready yet to perform an endoscopy, given her current state of health -- they feel the most likely culprit is a clostridium-difficile (C Diff) infection. That being said, the results for that test have come back negative--they'll continue to test for it for the next two days before they rule it out.

Her lung function has declined in the later afternoon and evening, but it still isn't as bad as it was briefly 30 or so hours ago. She had dialysis today, but they weren't able to pull much fluid out of her (nor were they able to the two prior treatments). At this point they theorize she's suffering from a bit of mild capillary leakage which happens to everybody here and there. The kicker is that in a healthy person, this is self correcting, whereas in her current state of health, Evie's body is not correcting anything. You'll notice in the pictures below that her face, particularly her eyes are becoming quite swollen, and unfortunately there is precious little we can do about it.

She is yet again desperate to be allowed to eat and drink (particularly because of the dry air from the BiPAP.) It may be a while, and it will likewise be a slower road back to "real food". But I think she is back to the point where she'd declare the corrugated-esque graham crackers delicious, so it may not matter.

Today's highlight was a visit from Evie's Aunt, and hosting an impromptu piano recital from her room in PICU while she played half a dozen or so Christmas songs on a keyboard that we borrowed from the recreational therapists. It boosted her spirits, but it also tuckered her out to the point that she slept for a few hours afterwards.

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.