One Year Ago Today: 01/16/2013 - Schedule Mishaps & Unplanned Successes

(01/16/2013, Wednesday) At 0200, the nurse informed me that we would in fact be picked up at 0700 for dialysis. Seemed odd, given the conversation that I'd had with the kidney team (deciding that from now on she'd do dialysis in the afternoons.) I questioned the nurse, but she sheepishly exuded confidence, so I just accepted it, and figured there must have been a new patient with more acute needs which altered the schedule.

I woke Evie at 0630 in an attempt to get food in her (microwaved oatmeal). At 0800, we were still waiting for the transporter to take us to dialysis. Our day-shift nurse called to discover that dialysis had never intended for her to go to dialysis at 0700, but rather had been planning for an afternoon appointment as we had discussed (in effort to avoid compromising her sleeping/eating schedules). Since we were already awake, they squeezed us in at 0930, and I managed to get Evie to eat more while we waited.

Evie was a homework track-star during dialysis--she did about 20 pages of homework while they removed a liter of fluid. Due to our late morning dialysis, we went straight to school even though Evie hadn't had lunch yet. I went back down to her room to collect her meal, and took it upstairs to the school so she could eat while she worked. We certainly could have skipped school given how hard she worked in dialysis, but I figured it would be a good distraction since today marked the 3rd day in a row that she thought mom would be able to come, but wasn't able to do so, and we'd already missed school on Tuesday.

While she was still at school I came back downstairs to talk with our case manager/social worker about what we'll do after we check out. It is looking like it may get ugly from a co-pay perspective... need to do more research in that area though.

When Evie returned from school we had another echocardiogram, after which we both took a nap, roughly 1630. We didn't wake up until almost 2000. The nap was good, the timing not so good. We woke up too late to order dinner, but the grill in the cafeteria was still open... and her nurse was able to order her a grilled chicken sandwich. Shortly before dinner arrived she vomited again (too much liquid drunk too fast) this time losing the majority of her evening's medicine. The up side is she hadn't eaten yet, so what she did eat for dinner, she kept down.

Due to the late nap, we stayed up and watched Disney Fairies "Secret of the Wings," (which she loved) and then Skyped with Aunt Angela and family. She really enjoyed it--particularly the inquisitive questions that her cousins asked which her sisters have never managed to ask. By the time she got to bed and was truly asleep it was closer to 0200. Bummer. She's desperate to go to the morning playroom session, but I'm not sure how solid of a plan that is.

Just before bed, she surprised me with a very epic achievement (100% her idea with no prompting from me): She used her walker to go from her bed to the bathroom, then stood UNAIDED for nearly a minute while washing her hands. She had a hard time falling asleep as she was giddy with excitement which she justly felt over the milestone.

Evie:

• Is keeping food down "better" and her appetite is improving.
• Had 1 liter of fluid removed today via dialysis
• Weighs 42.4 pounds.
• Still has a cough, but it has been merely an acquaintance the last day or two... here's to hoping it will become more of a bad ex-girlfriend that you remember, but you never hear from or see anymore.
• Balanced and stood on her own for a minute today!
• Looks forward to trying to use her walker a bit in the playroom tomorrow.
• Is getting her indomitable spirit and swagger back.   :-)

On the Homefront

My poor angel of a spouse continues to suffer while I am away, and sadly there is nothing I can do about it. Heather wanted to visit us on Monday, but little brother came down with the flu very suddenly that morning, while eating breakfast prior to being dropped off at a friend from church's house. Babysitting arrangements had already been made for him on Tuesday as well, but he continued to vomit through the night, so Heather couldn't come on Tuesday either. Surely she'd be able to come Wednesday... but it turns out she caught what he had, and got sick in the wee hours of Wednesday morning as well.

How does the phrase go, when it rains it projectile vom***? Never mind. Anyhow, while at home sick herself, blanketed by my still recovering toddler (recently re-monikered "King Cling") the school called to tell Heather that Evie's younger sister had just lost her breakfast on her desk in the classroom. Heather was too out of sorts to manage to wrangle little brother into the car--luckily one of our church friends was only a phone call away to lend a helping hand. Hopefully Evie's older sister will miss out on the fun--wish I could help, yet so glad I'm not near enough to contract it

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.