One Year Ago Today: 12/17/2012 - Sleep Deprivation, New Room #6

As is our new schedule, we woke up at 0600 for a blood sugar check, followed by a shot of insulin. Just in case anyone is curious, this is not a recommended method to put an 8 year old back to sleep. We then checked out the "dialysis patient breakfast". Too much butter and salt for the diet restrictions they've placed on her, and certainly not foods she is willing to eat. Consequently, if any of you find yourselves in Chapel Hill every other day at 0600, I know a little girl who would ***GLADLY***give up an entire bowl of Grits for a single pancake, or even old school Cheerios (which I began stockpiling at lunch today). The only thing Evie was willing to eat was a biscuit, which probably had too much butter/fat in it, but it was that or nothing as she isn't allowed to eat during dialysis (puts too much stress on the heart as it needs to supply too much blood to the stomach after eating.)

She finished her biscuit en-route to dialysis. She slept through a good portion of it, and while Evie wasn't sleeping, I read the first five chapters of "Dealing With Dragons" to her as we'd finished "Harry Potter and the Prisoner of Azkaban" yesterday. We finished dialysis around 1130, and she ate nearly a full container of dry Cheerios on the way back to the room where a real breakfast was conveniently waiting as I'd ordered it an hour earlier. She voraciously gobbled down her pancakes and promptly fell asleep again, at which point the nurse informed me that we were changing rooms--again. Heather, her sister, and her mother were on their way to the hospital to decorate Evie's room for Christmas as we're here for the long haul, so I was grateful that the timing worked out such that the new room was ready to receive them by the time they arrived. Would've been really sad if we'd decorated the old room and then had to move. Cross your fingers that we don't have to move again--for those of you who aren't tracking we've now enjoyed six different rooms at this hospital--that's right, we get around.

Evie had the dressing changed on her other PICC line today, which is really worse than having it removed. She was again shrieking and sobbing. Poor thing.

It is currently 2330 and she isn't sleeping peacefully, but she's already slept about an hour, so she's on pace to beat yesterday's total. She has a couple more days of the steroid, then hopefully the blood sugar issues will be able to resolve themselves. Since her kidneys continue to not demonstrate progress, she will likely have another procedure at the end of this week, or perhaps right after Christmas to have a more permanent access put in for peritoneal dialysis. Grateful the technology exists, sad that we'll likely need to use it.

I want to thank everyone for all the thoughts, prayers, and actions. Evie's received so many cards, and presents to help her take her mind off of things. She's particularly fond of the cool audio and video recordings of well wishes from cousin's and friends. We appreciate so much the kindness that everyone has shown us.

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.