One Year Ago Today: 01/10/2013 - Baby Steps Across the Room

(01/10/2013, Thursday) Today was a non-dialysis day for Evie, so we slept in until nearly 1000. After that, it was a non-stop stream of doctors, nurses, physical therapists, nutritionist, child psychologists, etc.

As rough as it is transitioning to home life with a bit of work peppered in there, transitioning back to hospital living was more tough. The doctors have been used to me being a constant figure that is fairly up-to-speed on things, and after having been gone for four days, I no longer had a good bead on where things were at. It was like high school physics class all over again:

Challenge: "What (insert random question here I should know the answer to)?"
Response: "I don't know."

Since Evie's TPN was turned off a few days prior, there is now concern that she isn't getting sufficient liquid or nutrition, so Thursday -- Saturday it is my task to document everything she eats and drinks. The conversation with her nutritionist was more confusing than it was helpful--I *SO* wish I'd followed through with the impulse to make the nutritionist order Evie's brunch that day. Any attempt to acquire "appropriate" food by ordering through hospital food services is laughable.

PT helped Evie replicate her success from a few days prior, and she crossed the room using her walker twice! The first time she cried. The second time her joints had warmed up a little, and although she was clearly pained, she gritted her teeth, and got it done without a peep.

Now that we aren't in Pediatric ICU, we don't often get to have the x-ray come to bedside, so we made a trip down to the basement to take a few good shots of her chest (checking on her lungs and the fluid which surrounds her heart.) After that, we came upstairs and removed her PICC line, which had been in long enough that there were worries of possible infection. With all that going on, we didn't make it to school, but it turns out it may not have happened anyhow, as all but one of the teachers were out with the flu (and they'd all had flu shots--so encouraging!)

The biggest news of the day is that she has crossed the line of demarcation and is no longer insulin dependent. Shutting off her TPN seems to have resolved the matter. The rest of the day was uneventful, but due to a late nap we didn't manage to get to bed until after 2200.

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.

One Year Ago Today: 01/09/2013 - Light, Dry, and Tired

(01/09/2013, Wednesday) 0715 dialysis. Brutal. Don't get me wrong, 0715 isn't that early, unless you're eight, unwell, and aren't able to go to bed as early as you would at home. (The bright lights, noises, and occasional needle pricks in the middle of the night don't help either). As an aside, we have given up on bothering to discover what they send for Evie's dialysis day breakfast tray. Today Evie slept through dialysis in its entirety. She lost another 1.3 liters of fluid,for a total of 3.8 liters removed in 3 days. Evie went from 49lbs to 43.5 lbs -- this is a crazy drop for anyone, but over a 10% reduction in weight for her. She came back to the room, ate breakfast, and slept through school. Evie enjoyed a hamburger for lunch (1600) and enjoyed watching Disney's Brave with her mom before she left. Evie and I ended the night by her taking a real bath for the first time in six weeks (well, sitting in inches of water anyway) which proved to be devilishly difficult given the number of things that were not allowed to be wet.

On the Homefront: Prior to making it to the hospital for the switch, Evie's little brother & I ran errands returning Christmas presents and exchanging one of of Evie's at a few stores and then we drove to the hospital so I could trade places with Heather.

Pony Royale "Brooke"

We got there later than I wanted to, and Heather left even later than we'd planned. Gratefully one of our fantastic neighbors was able to take care of the other kids, and made dinner for them (and Heather). I don't know what we'd be doing without the help of so many who are picking up our slack.

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.