One Year Ago Today: 01/01/2013 - Hooray Progress!

(01/01/2013, Tuesday) We had a good day today. Dialysis went well, with a net removal of 1 liter of fluid. Evie had many bloody stools (total volume around 600 ml's) but all the blood was very dark, almost black, which means it is much older than what we were seeing prior to angiography/embolization. At last check her hemoglobin is 10.7, her hematocrit is 30.4, and her platelets have risen to 103. Those are all solid/stable numbers which also indicate that there is no longer an active bleed. Her body just needs to purge itself of the old blood that went places it shouldn't have been.

We did not manage to escape the pediatric ICU today. We definitely considered it, but Evie vomited up about 80 ml's of fluid toward the end of dialysis. Some of it was most definitely blood, some of it was either wildberry juice, or red jello. I believe the blood came from bloody noses (which have started up again since we're back to room air which is not humidified.) Her glucose has ranged between 112 and 171 within the last 24 hours which means she's only needed a few units of insulin.

Evie enjoyed a bit of hospital style spa treatment today. Two of her favorite PICU nurses, Joy & Kelly put her in her wheelchair with the back reclined so that she could get her hair truly washed, and conditioned--with real shampoo and conditioner! It was easily the highlight of Evie's day. It was at the very end of their shift, so it fell to me to braid her hair, at which I'm not particularly good at, but I tried. She also had her nails done, so it was pretty decent pampering, for just another day at the hospital.

At night, it was the first time the Disney channel didn't have something on she wanted to watch... we watched a bit of the Notre Dame game, but it was such a blowout that she decided she'd rather watch "Chopped" on the Food Network. I wonder what they could do with a basket containing beef bouillon, jello, and ginger ale? That is pretty much all she's been offered thus far and she's only allowed to have a couple sips per hour. It will take some time to get things back to normal--but we'll get there.

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.