One Year Ago Today: 02/11-15/2013 - Discharge!!!

Evie 02/11-15/2013 Update

Bottom Line Up Front: Evie is ***FINALLY*** home!

I dropped Evie's baby brother off early Monday morning (2/11) with one of our church friends, then drove to the hospital to pick up Heather and Evie. Evie was discharged a bit later in the morning than we'd hoped so we were in a mad rush to get out of there, but not without having a few triumphant moments.

We arrived to dialysis training at the offsite dialysis training facility (near Chapel Hill) late. Monday & Tuesday (2/11-2/12) to learn how to perform CAPD (Continuous Ambulatory Peritoneal Dialysis) a manual method of peritoneal dialysis which requires only gravity, not a machine to function. It is our fallback plan for when the power goes out.

We will receive 700 lbs of supplies each month.

Wednesday (2/13) we were at our house by 0700 to receive our shipment of peritoneal dialysis supplies via 18 wheeler -- about 50 boxes or so that will last us one month (we are storing them in her brother's closet, he doesn't need the space right now. Since we had not yet received the machine, nor had training on how to use it, we completed 5 sessions/exchanges via CAPD 3 hours apart throughout the day. Evie enjoyed the time she was able to spend with her sisters.

We drove back to Chapel Hill and did the last exchange after watching UNC fall to Duke :-(

Thursday & Friday (2/14-2/15) we had more training, this time with the CCPD (Continuous Cycling Peritoneal Dialysis) machine (cycler). We officially signed the paperwork to get Evie approved for Medicare. I hope it is as awesome as they make it sound, because I had quite the sticker shock earlier in the week while at the pharmacy as they filled over a dozen prescriptions. After a longer than anticipated day on Friday, we were finally able to come home (for reals!)

The Rap Sheet

• Kidney Failure: Evie is connected to a CCPD machine each night for 10 hours. It takes me half an hour or so to set it up, and about as long each morning to take it down. To avoid giving her an infection:
  • I turn off all heating/air conditioning 30 minutes prior to and while connecting or disconnecting.
  • Anyone present in her room at the time must wear a mask.
  • The door to her room must remain closed.
  • I wash my hands with anti-bacterial soap for a few minutes, then use Nitrile gloves which have been covered with hand sanitizer.
  • I disinfect the room (and every doorknob and light switch nearby) with a bleach water solution once a week.
  
  All that being said, they estimate she has 12 months or less on average before she contracts her first case of Peritonitis. Here's to hoping we're above average.
  
  The treatments are going well, with the exception of the acute pain it creates in her shoulder toward the end of treatment. We've been tweaking things a bit, but have not yet figured out a way to lessen the pain--it seems to be severe, and as of yet, unavoidable.
• Diabetes: Evie takes a long-lasting (24 hour) insulin shot each night, and checks her blood sugars prior to each meal and before bed--they're still tweaking how to handle this. It is impacted by how we tweak her nightly dialysis routine, as the solution she is treated with contains significant amounts of dextrose (sugar).
• Nutrition: Evie is receiving liquid nutrition via g-tube for 12 hours each night, providing the entirety of her daily caloric requirements. Unfortunately, the liquid curdles if at room temperature longer than four hours, so that means Heather or I must refill it at the 4 and 8 hour marks. Good times. Her appetite has not yet bounced back, but she is eating, and anything she eats is weight she will gain back.
• Mobility: As you can see from the photos, Evie has made huge progress since I last sent an update in this regard -- once she began receiving the necessary nourishment to survive, she quickly became more capable and willing to move around. She currently weighs 19.2 kilograms. It is debatable whether she really weighs that much, or whether she is not *dry* enough (from a dialysis standpoint) but that is where she's hovering at this point. She's looking forward to a prescribed aqua-therapy class which ought to be perfect for helping her get stronger.
• Energy: She requires at least one nap a day. Sometimes she doesn't take it, but she certainly needs one.
• Random Thoughts:
  • It has been unbelievably wonderful to be together again as a family. We missed each other.
  • It has been extremely difficult to be together again. It had been too long. We're all trying to readjust, but with all the things Evie requires, it is very difficult to feel like a good enough parent when it comes to effectively nurturing the other three kids--Particularly when two of those are sick, and one of them can't speak any English, and is quickly approaching the terrible two's.
  • It is overwhelming to think about a newborn being added to this mix, but we have about three months before it happens.
  • I spent more time at the hospital so far than I had been in our house since it was built. We have Christmas decorations that I had gotten out right after Thanksgiving that never got put up that I need to put away. That is the how close to "order" our house is.
  • Some of you who receive these updates via email have been asking me if sending money would help... my answer remains the same -- times are tough for everyone, and so far things are pretty okay, but thanks for the offer. Since Evie was only discharged on Monday, the bills are only just beginning to trickle in--(beware the spring thaw!) I have not yet received the bill for her stay. If our new budget items become more like millstones than not, I'll let you know. I do get the impression from what I can glean from others in similar circumstances that I may need to start planting money trees. (However, I like to think I'm more fiscally responsible / tight-fisted than "those" people.)
  • I must particularly call your attention to the gratitude which I have for our church members and neighbors who so fully stepped in to take care of our other kids during this past week. When the girls weren't at school, they were either with church friends, or neighbors. Likewise, we were able to spend our evenings this week at the home of one of my co-workers parents who live in Chapel Hill who graciously opened their doors (and cupboards) to us. Between them, our neighbors, and friends from church, we witnessed a great deal of charity -- the pure love of Christ. Who says there are no angels among us? I will never be able to repay the kindness, and hesitate to put any further strain on the cruse of oil, although we are admittedly overwhelmed.

  TL;DR

  
  
  Evie is home. She'll require dialysis every night until she is well enough to qualify for and receives a kidney transplant. The doctors say a live donor is her best chance. She now has type 1 diabetes. She receives her nutrition every night while she sleeps. She won't be allowed to go to school for the next six weeks. She is a cheerful, thoughtful soul who sincerely enjoyed watching (and briefly being out in) the snow that we had on Saturday, which seemed to have been saved special, just for her.
  
  
  
  

  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.