One Year Ago Today: 02/01/2013 - Discharge Date Set!

(02/01/2013, Friday) I must apologize for my recent lack of information sharing. Last week was rough--particularly unpleasant to endure. This week was not without its challenges, but gratefully significantly better than last week--its just been hard to find/make the time to post about it.

I suppose part of my lack of posting is due to the looming possibility of discharge--didn't want to jinx it by talking about it--and honestly it seems a bit futile to discuss it as we've had **SO** many set dates which we've already missed. Mostly though, there have been so many times throughout this experience where we had a good day or two followed by the proverbial wheels coming off in some other aspect--it seemed typical to have an awful week followed by a few good days, so I've just been holding my breath waiting for the inevitable kidney punch*       *pun not originally intended, but left behind for posterity's sake.

All that said, for now, it appears that Evie's body may have run out of "other shoe(s)" to drop. I'm trepidatious, yet giddy with enthusiasm just at the idea that there may not be anything else significant that we need to plan for, resolve, or adapt to.

Evie:

• Receives 660 ml's of nutrition via feeding tube at night--roughly 700 calories.
• Weighed 18.35 kilograms at the end of dialysis today. (A 0.3 kg gain... most of it not likely to be permanent, but some fraction of it could be, so that is great news.)
• Still doesn't tend to manage to hit daily caloric intake targets on dialysis days, but is certainly doing better.
• Still no need for oxygen!
• Blood sugars are still a bit curious, but we haven't seen many crazy high numbers.
• Seems to have recovered from last week, and has not even napped the last two days (unless you count the 15 minutes we both fell asleep for while waiting for a technician in x-ray today.)
• ***Is scheduled to begin the offsite peritoneal dialysis training on 2/11/2013--and on a related note is scheduled for discharge from the hospital on the same day!***  We won't actually be home home until around 2/15/2013 or so.

One of the side benefits of her having been here so long, and finally appearing to be more stable, is that it has provided the opportunity to track down the local Osteogenesis Imperfecta (OI) specialst(s). We've talked to one of them at length a couple times now.

She's been experiencing some acute pain which they are testing her for a potential bladder/urinary tract infection. She's also been having a bit of intense discomfort due to the placement of the inside-the-stomach portion peritoneal dialysis (PD) catheter--they assume this will go way once she begins PD.

In short, she is bouncing back well from the physical/emotional trauma that was inflicted upon her last week.

And now, a few photos... Evie's little brother was able to come visit yesterday for the first time in a while. They both enjoyed it immensely. The last photo is a picture of the clip-on earrings she made this evening (we do a lot of crafts.)

 

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.