One Year Ago Today: 01/13/2013 - Discharge "Soon" (Whatever that Means)

(01/13/2013, Sunday) Today started off a bit rough due to the lousy sleep, and the flow of doctors that morning brings. By the third time someone with a stethoscope tries to wake you up to tell you "Hey honey, I'm just going to listen." You don't really care that they're only listening, you want them to go away and never come back. Her appetite today is significantly reduced, but I am not fighting it as I don't want another vomiting episode. We had an echocardiogram, the results of which I have not yet heard--which typically means relatively little change in status.

Evie has spent her day enjoying church music, reading a magic treehouse book, and playing various games. I have not yet found a way to coax her into doing PT as her appetite has been nearly non-existent, and her cough doesn't seem to be improving.


The past week's improvements include:

• Back on solid food.
• TPN (dinner in a bag) has been discontinued.
• Removal of PICC line -- only line still in is her dialysis line in her chest--they do blood draws for labs during dialysis now.
• No more blood sugar/insulin needs -- once the TPN stopped (25% of which was dextrose), magically her blood sugar seems to have righted itself.
• Her blood pressure seems is more in the realm of what it should be, dropping from the 140's over 100's to 100-110 range over 65-80's.

Between questioning the Nephrologist (kidney doctor) and her dialysis nurses, I've been told that she is quickly approaching being stable enough that she will be well enough for discharge "soon". (Such a relative term!)

Prior to discharge, she'll undergo a procedure to get an access/catheter put in for Peritoneal Dialysis. Unfortunately, the latest bit of information I have learned is that the standard wait time for its use is 4-6 weeks after surgery so that it can heal to the point it is ready for use. So unless we get to start early we'll be driving up here every Monday, Wednesday, and Friday for 4-6 weeks after discharge to have hemodialysis.

So, we are faced with a 1.5 hour drive each way, with 4-5 hours spent here, or we could stay somewhere in Chapel Hill for the next 4-6 weeks (but not the hospital.) Superb. There also remains the peritoneal training that Heather and I are both required to attend for 5 - 10 days at some point before we'll be allowed to do it at home on our own.

I was also informed today that since the hospital dialysis unit is in-patient only, we will have to check in and out each day we are here for dialysis. I have a meeting this week with the social worker to discuss this, as it poses a big problem if they bill the insurance company for it that way. I pay $150 a day to enjoy the hospital with Evie. If it is a continuous stay, that cost is capped. If it is several separate stays, it isn't (until I hit some ridiculously high number for the year.)

Things have most definitely improved, but given how things have gone, it is difficult to shake the "I wonder what will go wrong next" mentality.

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.