One Year Ago Today: 12/13/2012 - Blissfully Untethered on an Uneventful Day

(12/13/2012, Thursday) Evie enjoyed a medicated sleep and slept for large portions of what turned out to be a mostly uneventful day. We met with the surgeon who will be putting in a new (less temporary) hemodialysis port/access for Evie. The procedure will happen on Friday (12/14/2012) @ 1000. The new access will utilize a vein at her neck, but the access itself will come out of her chest so as to reduce how annoying it is.

She is being weaned off her steroid, reducing it by 2 ml every other day (she's currently at 6 ml). She is no longer on an insulin drip, and so far has required only one shot around 11:45pm) when her blood sugar reached over 400. It has been as low as somewhere in the 30's. Gratefully, the wild swings are caused by the steroid which she has nearly completed the course of, and although she had high blood sugar, the amount of insulin given to her in her shot was ridiculously small but it did the trick.

Since she was scheduled for a procedure Friday, they had her do dialysis today as well. Her blood pressure was in the 140's, but beyond that her heart did not seem to be having any issue with the 2.5 or so hours that she spent on dialysis today.

She ate well, although not as voraciously. She has not been allowed to eat anything midnight Thursday night / Friday morning in preparation for undergoing anesthesia. We washed her hair and changed her clothes and linens before bed, as she won't get another opportunity within the next few days. The highlight of the day was having her completely disconnected from everything and picking her up out of bed and then singing to her and dancing with her while I held her in my arms.

If you recall from my post on 12/10, we have accomplished all goals necessary to graduate from PICU. I double checked with the doctors this morning, and as long as there is a bed available upstairs, we'll be able to graduate from ICU tomorrow -- it may take until Saturday or Sunday before a bed is available though.

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.