Day 24, cont.

Jimmy had his weekly appointment with the dialysis nurse today.  It took an extraordinarily long time - I didn't find out until he was ready to leave that they had done a manual exchange (never occurs to anyone to come let me know what's going on).  They said his fluid was "cloudy" and also he had some fibrin.

The nurse knows the heparin is an issue for me, so they gave him some in the exchange.  I don't know if that will be enough or not.  DSS came very early to pick up DGS ... again, never occurred to anyone to let me know he'd be coming early so I could get the bags set up for him.  I think he truly has no clue how important it is to his dad.  But then, even if he does, I think they all just think it's MY job.  They'll help out ... IF it's convenient, and IF it's something they're willing to actually do.

The cloudy fluid could mean an infection (they'll let me know as soon as they get test results).  That would explain why he felt bad yesterday.  But there's no way of even guessing where an infection came from.  I suppose that's probably my fault too, since I have to do everything.  I try so very hard to be super careful; but apparently it isn't enough anyway.

As soon as we got home he laid down.  He said for "an hour"; but it was 1:30 to 4:00.  Then I warmed up one of the pork chops.  Around 7:00 I heated the other one and a baked potato.  As soon as he was done eating, around 7:30, he wanted to go back .. but then he did wait until 8:00.

At 8:45 I went on and hooked up the dialysis (which, fortunately, I had set up earlier.  Seems I have to seet it up earlier and earlier).  He hasn't even gotten undressed.  I won't be surprised if I go back at 10:00 with pills and find him still lying on top of the covers in his clothes.  When he doesn't feel good (although he's not said a single word today about not feeling good, just needing air, but that's normal every day now) he's not willing to make any effort.

And because he's not willing to try, or to make any effort, I foresee the time coming when I can add getting him in and out of depends, bed-bathing him, etc.  I suppose we'll eventually have to have a hospital bed for him.  And if he continues to get weaker (because nothing has ever convinced him that exercise prevents weakness, and now I have serious doubt about what he's even capable of doing), we'll have to get a hoyer lift in order to get him from bed to wheelchair for appointments.  How we'll manage from chair to car and in reverse is completely beyond me.

I guess I won't have any chance to get out again for a couple of weeks.  DS & family are coming again; I don't know yet if for the day (day before Father's Day) or an overnight.  If it's only for the day, I'm not likely to get away, because I'll haveDSS & his crew here too.

I guess I'm just going to have to wait and see how things work out.