Day 35

I don't even know if I'm counting days right or not - and I don't know that it really matters anyway!

Yesterday the nurse, Lucy, from Paliative Care came for a follow up.  I fully expected her to say she wouldn't be by again, based on what she had told me the last time.  But I admit, she surprised me.  She said that just that morning she had talked to someone who said they still think they can get Jimmy admitted into a hospice program.  First they'll have to have an order from a doctor.  I don't think that's a problem; we can probably get an order from the nephrologist.  But, I think more practical would be an order from his PCP.  He goes to see her next week anyway.  Actually, she's a PA ... but the MD over her would sign based on her recommendation.  Anyway, after getting that, they'll send someone out to do an evaluation.  The previous attempt didn't get that far, so we'll "wait and see" this time.  I explained to her (again) that the problem before was that all his conditions were "tied together" because of the original lung problem.  Nothing has changed in that regard.  She feels that if someone comes to do an evaluation (apparently as opposed to just looking at the paperwork Duke sent), they will see things differently.  He's extremely weak, especially on the right side.  He falls frequently no matter how many precautions I try to take.  He insists on using the BIPAP nearly all the time, because he feels short winded, out of breath.  Obviously he *can* do without it at times: it doesn't go with him for doctor appointments.  But we never go anywhere else (other than he has to just wait in the car while I run errands while we're out because it's rare to get to do them any other way).  When we get home, he's anxious to go lay down and get that BIPAP going.  (the nurse said that when someone comes to do the evaluation, he should be wearing that ... not to "mislead" them, but just so they are aware of how much he has gotten dependant on it).

So, we are once again in a holding pattern to see what happens next.  Since he goes to dialysis clinic today (at least, I hope he does - dialysis has taken about 2 hours longer than it should; apparently only because he was laying on the wrong side!  So it's making our time frame really close!).  I'll request another hospice referral while there, although I don't think the doctor will be there today.  Then we still have to wait 3 more days until his appointment next week to discuss the issue with the PCP.

I'm still not convinced it will work out this time.  I suspect that if any agency does decide to accept him and disregard the dialysis, it won't be until his lung function is low enough to qualify for oxygen.  I have no idea if he's there yet or not   He's not as short winded as he thinks he is most of the time; but when he gets up to walk, that could be a different story.