One Year Ago Today: 01/02/2013 - Goodbye PICU!!!

(01/02/2013, Wednesday) Today was a long wait & see day -- as I'd alluded to earlier, we'd hoped to move out of Pediatric ICU on Tuesday, but they didn't quite get to the point of feeling comfortable about that, so we stayed. By Wednesday morning the concerns that had been voiced regarding Evie moving to the regular floor had been resolved.

I spent my morning, making sure she'd be moved up to the floor prior to 1500 as the playroom is open from 1400-1600. Once that was guaranteed, I went about establishing a contingency plan -- soliciting and acquiring all special permissions necessary to be allowed in the playroom while still a resident of PICU -- to include having her nurse accompany her to the playroom as required by policy. This was important for a couple reasons. First and foremost, Evie needed something good and fun to happen as the journey has been rough on her. Second, if executed properly, this would finally provide her the opportunity to see her sisters in a very long time.

Meanwhile in a distant, though not wholly separate land, I had asked Heather to alter the rest of the family's schedule such that they'd be able to depart early enough such that they would arrive here in Chapel Hill by 1500. (Roughly a 1.5 hour drive.)

You're all likely aware of my affinity for the concept of JIT (Just-in-time) -- which is typically viewed as a smart thing in sensible areas of business and computer science. If I may say so, my groundbreaking homage to it throughout my stint in academia while studying both was visionary. (Please note: Those in the know called this "Just-in-time-homework-manufacturing" or "Dynamic-code-creation"; however, it is possible you may have heard non-believers callously refer to this concept as procrastination.).

In any case, since I'd realized later in the afternoon on Tuesday that we weren't moving that day, I stopped stressing over trying to get packed up and organized, so I left a horrific mess--thus creating the opportunity for JIT packing Wednesday morning. So I busied myself with getting us packed while Evie enjoyed an echocardiogram, and more Disney channel. She was still restricted to 2-3 sips of liquid per hour, so I interleaved that into the JIT packing process. By the afternoon, I was done and her body was hungry for a nap. So we slept.

By 1445, we'd become bright-eyed-and-bushy-tailed. I was not shocked to discover that the transfer orders (moving us from PICU to the regular floor) had not yet been completed. As a good Boy Scout, I'd prepared for this very circumstance, thus the contingency plan. I got a status update from Heather--they would be arriving by 1515, so I had a half hour to locate our nurse to reconfirm plan B. It took me about 10 minutes to find her (she'd been at lunch) and I reminded her that I would need 3 sibling passes for the playroom, and we'd be ready for her to take us up there in about 15 minutes. The response back wasn't encouraging ("Okay, I better make sure I can go up there with you.")

The family arrived around the same time as I was told that the nurse would not be able to accompany us upstairs to the playroom. The olive branch that was extended was that our new room was "nearly ready" and once it was, we'd be allowed to have visitors. That didn't bode well with me as I'd experienced the "nearly ready" room phenomena 4 times already during this hospital stay, and I didn't think having Heather and the kids wait for hours was a good plan.

It was particularly vexing, given the amount of planning and preparation that had occurred. If she was checking out of PICU, and wasn't on the regular floor yet simply because the room wasn't clean yet, what was so wrong with her waiting out the hours it would take them to clean it by being in the playroom? A kid on the regular floor doesn't require a nurse to be with them. Could we not convert her status to "regular floor kid" and just let her go? The answer of course was no -- common sense and logic isn't always applied in a place of such learned men.

Luckily, one of the recreational therapists (unaware of the drama, or the fact that we were moving that day) came down to see Evie and invested herself in trying to resolve, or at least improve the situation. In the end, I was allowed to take Evie to a waiting room (while the recreational therapist accompanied us) where she got to spend time playing Connect Four and Star Wars Operation with her sisters, while watching her brother and his associated chaos.

Three hours later, the room was ready and I began transferring Evie's belongings to the new room. One of the nurses asked if I needed her to call a moving company. (As aforementioned, the hospital Santa provided crazy amounts of stuff.) The irony is not lost on me that Wednesday night happened to be the night that a few guys from church came to visit me--arriving within a minute or two after the nurse joking around about movers. So my friends assisted me in moving everything upstairs so that I wouldn't have to take numerous trips. I spent the next hour or so talking with them (while they all took turns wrangling Evie's little brother) while Heather and the girls hung out in the room.

One thing I learned via the conversation (as well as an email I received earlier) is that our entire congregation had knelt in prayer on Sunday on Evie's behalf just prior to her procedure. (I don't believe they knew at the time that a procedure had been scheduled.) Things went so well. Thank you ward family.

All our visitor's had left by 2000 or so. Unfortunately, Evie vomited a bit, shortly after their departure--nothing much just random stomach contents. We got to bed around 2230.

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.