One Year Ago Today: 01/25/2013 - One Step Closer to Home!

(01/25/2013, Friday) Due to her scheduled procedure (to add a peritoneal dialysis catheter), Evie did not eat or drink after her late dinner last night, around 2100. We had dialysis from 0700-1100. She slept through most of it. They filtered her blood, and removed a whopping 0.1 liters of fluid, because her "wet weight" (her weight prior to dialysis) today was exactly the same as yesterday's "dry weight" -- This is due to her schedule yesterday precluding her from having an opportunity to eat, drink, or sleep whether she desired to or not. My sister asked me, how I was doing today. My response? Things are definitely better than yesterday. I'm not motivated nor prepared to be arrested for assault/battery today, so clearly I'm in a much better place mentally. Heather arrived as dialysis completed. Evie began watching something on Disney Channel while Heather and I had a meeting with "The team" to discuss "the plan" and talk about "the issues". Shortly after the meeting was over, it was time to go down for the procedure. We spent a fair amount of time waiting, but eventually at 1345 or so, the anesthesiologist gave her medicine that made her sleepy and giggly and took her away. At nearly 1600 we were told that the procedure went well, but we had to wait for her to wake up so that we could visit her one at a time in the recovery room. The procedure and recovery was supposed to take about an hour from start to finish. It took more than two. Everything went well, but there was a larger than expected bit of tissue which had to be removed that was essentially just a strip of fat (hard to imagine she still had any.) I'm sure it had a purpose, but in weighed priorities, it lost, and now she doesn't have it. I don't know if it'll grow back. She's got a fair amount of abdominal pain, but it was all to be expected, given the type of surgery it was. She's got a baseball style set of 8 stitches covering the inch or so incision which will be taken out in a couple weeks. (For orientation purposes, you can't see Evie's belly button in the picture below, but it is just out of frame past the top right hand corner.) Eating is a chore. Evie was not hungry when we came back to the room, so we let her sleep. Once dinner came (around 1945) she threw up--three bites into her first meal of the day--admittedly I provoked her, being agitated that she was not making any effort to eat. Afterwards we had a good discussion and we hugged it out. The trouble is by tomorrow, she'll likely have forgotten her new resolve, and the cycle will repeat. At least for now she's eating the rest of her dinner well (on her own). Its a pity she threw up her medicine, but not the end of the world--they re-dosed her.

At this point, they've thrown the kidney patient diet (low phosphorus, low potassium, low sodium, low sugar) out the window in favor of trying to get her to eat *anything*. Trouble is, dairy is bad for her as it contains things her kidneys can't process on a molecular level, so dialysis can't fix it. But she needs Calcium. But she can't eat many other (non-dairy) calcium rich foods. Once she's fully recovered, meal planning and nutrition for her are going to be brutal. We're crossing our fingers that Evie doesn't develop gluten allergy too, because at that point, just about the only thing she'd have left to eat is straight protein.

We'll be allowed to go home when

• The cause of her diarrhea is diagnosed, and/or it goes away
• We're able to stabilize her from a daily caloric/nutrition requirement standpoint
• We're able to determine once and for all whether she is diabetic
• We're confident that her oxygenation issues have been dealt with

I think that is everything. That could all happen this week. We'll be driving up here to check in and out of the hospital every other day until her peritoneal access is ready for prime time, about mid-February, at which point we'll be up here for about a week for training. Ideally that means we will be doing home dialysis prior to the three month anniversary of when Evie became sick.

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.