Ongoing dialysis struggles......

Peritoneal dialysis has been a struggle for our daughter from the start.  Each and every night since we started home dialysis (was it really August 22?  I must redefine "eternity") she has awakened numerous times per night in pain from the suction of the fluid removal part of the cycle.  We had permission to take two nights off this past weekend, and even though we didn't go camping as planned, we took those nights off anyway. 

Restarting was less painful.  I think the days off allowed for a bit more healing.  Right about now would have been the surgeon's first preference for using the tube anyway.  But remember what I said about wondering what we'd do if the power went out?

Well, we found out this morning. The machine misread something about a bag clamp, and at 4:30, after trying everything the manual said, I had to call the company hotline. They suggestioned  all the things I'd already tried (maddening when you've been listening to an alarm for half an hour already) and then told me to power off and start over. That didn't work either, so we were told to disconnect her and attach a gravity drain. Well, I have 5 boxes of drain tubing (which we don't need). Three boxes of drain bags (which we don't use and won't work alone for this purpose). But we apparently lack the little blue hickeydoodle that allows us to hook her up to a gravity drain. Oh. 

So we move on to the on-call nurse. The kid has 700cc's of fluid in her belly right now. The on-call nurse asks if she can handle that. Huh???? Oh, you mean when she's AWAKE??? Hard to say since she is never awake and upright during this part of  her treatments! She always awakens on empty, not full.  Nurse tells us to unhook her as if the treatment were done and leave the fluid in.  Fortunately, she has an appointment at the dialysis center today, so they can drain her out there.  Hopefully they will fill hubby in on what to do next, and we will get it all sorted.

And I was SLEEPING. She had only awakened once during treatment due to pain, instead of hourly as she had been doing. Dammit. I really miss sleeping!

DeeDee