One Year Ago Today: 01/03/2013 - Weigh-In-Gate

(01/03/2013, Thursday) The transition from PICU to the floor is always rough, and the first 12 hours was textbook lousy. Through the night Evie's blood pressure was acting up (irrespective of the medication that should keep it in check). Unlike downstairs in PICU where they leave a cuff on and check it automatically at a pre-defined interval, here on the regular floor they do it manually. That means they woke up Evie every hour. Sometimes 15 minutes later they would give her additional medication, or when her blood sugars were checked, she'd also get an insulin shot.

I was fairly exhausted, and slept through many of these checks as I wasn't the one getting pricked, or asked to sit up, or whatever. Sometime between 0400 and 0500, the nurse's assistant came in to weigh Evie. Weighing her is important as it is one of the factors that they use to determine how much fluid they need to remove via dialysis--I was not awake at this time as I had set my alarm for early morning (0700) dialysis where we weigh her twice (before and after) every time we go.

At any rate, I have a fuzzy/groggy perception of what happened next as I awoke afterwards to the sound of Evie, back in bed, crying--They had Evie attempt to stand at the scale without assistance. Without digressing into a lengthy rant, let me say, that was ludicrous. At the time, I thought she was crying due to the general Guantanamo bay approach that hospitals seem to have toward their patients when it comes to sleep deprivation. Who wakes up a kid who is finally well enough to leave ICU to weigh them before the crack of dawn? I don't mean to be rude, but is common sense so uncommon? I could find any number of people who live in poverty who haven't been able to benefit from so-called higher learning that would agree with me that such a practice makes no sense.

But consider Evie. She hasn't been out of bed moving on her own power in nearly six weeks. If that weren't enough, she is genetically predisposed (Osteogenesis Imperfecta, Type 4) to bone fractures. Given all that, imagine my irritation. She was woken up at 0630 by another insulin shot, so we gave up on sleeping, since the transportation folks were due to arrive at 0700. While we were at dialysis, one of her nephrologists came by, and she happened to be the first person I'd seen that morning that I thought would do something about it, so I voiced my concerns (perhaps a bit too animatedly) in a not so amiable fashion.

Evie was able to sleep for about an hour or so during dialysis and they were able to remove yet another full liter of fluid. We did a bit of homework (first time she's felt well enough to do any), and then enjoyed lunch (more beef broth, jello, and apple juice.) After that she was at the hospital school for an hour working on reading and vocabulary.

Shortly after that, we were talking, and Evie recounted the tale and informed me of details I was unaware of regarding what I'll now call "Weigh-In Gate". It turns out that the nurse's assistant had instructed her to stand up at the scale on her own. She'd told them she didn't have the strength to do it. They'd replied "C'mon, you can do it, just try." After additional coaxing, she did try.

She 
        fell 
               down.

Now mind you, I was not awake at this time, so I can't provide a first-hand account. However, I have no reason whatsoever to doubt Evie's word. It is possible that the nurse's assistant was actually helping her in some fashion (I doubt in her groggy state that she would have scooted to the edge of the bed herself, much less step off) but regardless, it sounds as though she fell down (she mentioned something about ending up in a squatting/kneeling position.) If I had been less than amiable when I spoke to her doctor about this event, at this point, I was incensed. Gratefully, physical damage (to Evie) does not appear to have occurred--but it certainly has taken an emotional/mental toll on the poor girl.

Her dance card throughout the rest of the day continued to burst at the seams. She spent time with a physical therapist (tearing up at the suggestion that they practice standing.) We also went to the playroom, and just hung out and worked on crafts--she's been enjoying a weaving loom, (and quickly exhausted her raw material supply.) We also made a little bead animal dog for a boy a few rooms down the hall from us who was celebrating his birthday, and delivered it to him later on in the evening.

Later we spent time with the recreational therapists who had Evie play doctor, to include giving the stuffed animal she dubbed "Miss Hippo" an IV, listening for the heartbeat, performing blood sugar checks, giving it an insulin shot, etc.

When we finally got back to our room, we found out that around 1800 that we'd been given the green-light to change rooms again. (While Heather and the kids were here, it became clear that there wasn't quite enough room for her brother's stroller, Evie's wheelchair, all the people, etc.) The new room is about 30% bigger, and it will be much nicer for family visits on Saturdays. So I spent the rest of the night unpacking everything, to include organizing everything and figuring out what we could send home, even if only temporarily. We got to bed around 2300.

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.