This is going to rank in the top five of the hardest posts to write. They've all be hard lately, but this one, well, this one is really hard.

Bill was agitated again when I got there, breathing so hard against the vent that his head was raising from the pillow. At some point in the night his teeth had been taken out, so of course he looked different. He did wake up when I spoke to him, but not for long. His numbers were also all over the place, heart rate high, respirations high on the monitor, blood pressure high, oxygen low.

He got his morning meds but the xanax didn't really help calm him, just kept him asleep. He was trying to cough and I got a nurse to suction him and she got a lot of thick stuff out and called respiratory. Krystal came but didn't get much more out.

When Dr. Aswan came in he said he didn't think that he would be able to come off the vent now. He's also concerned that he's losing muscle and tissue and not just fat. So, his body is wasting away now and he's becoming emaciated. He ordered a chest x-ray and said he would look at his labs and let me know what he thought, but he never did get back with me.

Dr. Threlkeld said that another germ has shown up in addition to the pseudomonas that doesn't respond as well to the Zerbaxa, so he was going to have to do some figuring to see what kind of cocktail he could come up with that would hit both of them.

I only saw Dr. Edwards as I was going to lunch but he indicated that he was not going to Bill's room, and then I didn't see him again. I did see his nurse Kim and she asked if he had been bronched. I told her that he had not since I had gotten there a little after 7, but, in hindsight, that could explain why his teeth were out, and why he stayed so agitated and asleep.

His blood pressure stayed high until the afternoon, but because it was up he hadn't gotten his mididrine so Rachael was going to give it to him with his 4 o'clock meds.

Caleb came in and gave him the spa treatment. Not only did he shave him, he trimmed and washed his hair and then he and Rachael gave him a good bath, taking their time and doing one limb at a time. 

Caleb did ask him during the bath if he could tell when he had to pee and he said no so, Rachael said she was pretty good at getting condom catheters to stay on, so she attached one of those, and it started filling up. So, even though Bill was going a little while he was sleeping, he could evidently tell that he shouldn't be. I told Rachael and Caleb both that after 77 years of not going in your pants, it's hard to get it out of your conditioned mind to just go. So, maybe this will help.

After his bath, they got him on his side and he went to sleep, and he was really asleep. And, his numbers all stabilized and he was the quietest and relaxed he had been all day. But, when Krystal came in to do his breathing treatment, we thought that his mouth didn't look quite right and he was drooling and his tongue was staying to that side. So, we got Rachael and she started going over the signs of stroke with him. Now, the left side of his mouth has had a slight droop since the transplant stroke, but this seemed more pronounced, maybe because he didn't have his teeth in. When asked to smile, only the right side of his mouth moved, but he could stick out his tongue. So, we don't think he's had another stroke, it was just the position he had been in.

Now, this may not seem too dire. And it doesn't to me writing it. And, if you remember, Dr. Edwards has been saying that we need to start thinking long-term. But, I got the impressionn from Dr. Aswan, that long-term really isn't an option. I'm sure you can already see what's coming and why this is so hard. He intimated that it's time to make those really hard decisions and consider letting him go. But, every time I ask Bill if he's tired of all the fighting and poking and prodding and just wants it to stop, he says no. He didn't say yesterday one way or the other when I asked. I've told him it's OK to say enough is enough, and that I will be OK. The kids, and not just my 2 but his also, have said they will make sure I'm OK. So, depending on what we find out in the next few days, we'll make that decision. I've actually made the decision, made it a long time ago, it's just waiting to hear that it is time.

I told everyone yesterday who needed to know. I've also asked for them not to call. That's the one good thing about modern technology, it's so much easier to text when you're emotional than talk, when all you're doing is crying.

I thought I was ready for this, since he had come so close so many times before. But, this is a lot harder than I ever imagined it would be. I did not tell the kids or his sister to come, because it is not going to be imminent, unless something happened in the night and they didn't call. And I didn't do it to be selfish to keep him to myself. I just think that even though it's coming, it's not coming today.

One thing I do need to check. I do need to ask if they bronched him. He had been so junky the day before and coughing up so much stuff, they may have done it after I left in the night and just didn't say anything when I got there. Although, Bill is in no condition to give consent, and they didn't call to get oral permission for the procedure. Come to think of it, they didn't have me sign anything giving permission when he was sent to the unit. Of all the papers I signed, that wasn't one of them. So, I do need to check on that.

So, hard post to write. And who knows, Bill could be wide awake and watching TV and waving at me as I walk through the door this morning. He does like to do things his way and maybe he's not ready to check out yet. We'll have to see.