Trying to write this to adeequately describe the day has been hard. It was a good day, but very tiring. Bill and Petra had a good time winking at each other. They cuddled on the bed for a few minutes while William stood to the side and held his hand. I don't have their mom's permission or I would include a picture of them.

By the time most of the kids and grandkids had been in, and some only stayed a few minutes, Bill was totally wiped out. Kiyann brought him a card and after I showed it to him, he winked at her and she immediately turned to me and burst into tears, which made me cry. Kayden gave him a hug and then had to leave the room. He's got such a good heart, especially for a teenage boy. We were all in tears by the time it came time for them to leave.

Bill didn't have a very good night, so I'm hoping tonight will be better. I'm not fond of the nurse he has tonight, but he knows I'm going to be here, so maybe it will be different. He's one that doesn't take into consideration waking people by turning on lights or making noise. So we'll see. Anyway, back to last night. The condom catheter lasted until about 8. Cole had a hard time getting it replaced and Bill ended up pulling it off 3 different times. They finally just put it on as good as they could and then wrapped him in a towel to keep him as dry as possible.

He also woke up at 2:30 am and didn't go back to sleep. He was also mean to the PCA who came in to take his temperature. I had to remind him that he didn't need to treat people that way. He stayed agitated and Cole gave him some xanax and then called Dr. Edwards when that didn't settle him down and he got a dose of Haldol to further calm him, which did work.

We did meet with the palliative care nurse practitioner and there were two additional things that needed to be discussed. As to not doing anything now, as I explained before, Dr. Edwards had voiced concern about doing any chest compressions if his heart stopped. The vent would still be breathing for him, and they would do everything medically possible to restart it, but we've decided that CPR would not be done. She also brought up that he knows he will not get off the vent, but she didn't want to remind him of that today. I'm not sure that he does realize that, even though when he asks for it to come out I tell him if I take it off he will die. So, I will take that upon myself to make sure he understands that. Other than that, everything remains the same as to the two of us making the decision of when to stop the fight. 

Mikayla did get a new catheter placed and we noticed that his urine is back to that cranberry color again. She brought it to the attention of Dr. Edwards and he looked at it and thought that it actually now had some blood in it. That could be any number of things, with kidney failure be one of them. I'm sure they're monitoring his numbers for all of the things it could be. Failure could also explain the swelling of his hands, although that has gone down and come back and gone back down again.

He complained about his midline site hurting, so they put a hot pack on it. I don't know if it helped him or not as I left for about an hour. Ryan had car trouble on the way down and his truck was at the Cracker Barrel in West Memphis. Amanda had a cousin that was going to come and pick them up and take them to their house for the night, but they needed to get back to West Memphis. So, I had the girls come back to stay with Bill while I took them. It was the first time I had left the hospital since I got here Thursday morning. But, I also noticed that I was driving without really knowing where I was. I was paying attention to the traffic, but that was about it. I know it's because I'm just worn out from all the emotions of the last few days, seeing the kids, and everything else going on.

One thing Bill did do today immediately made me cry. I gave him a kiss on top of his head and he reached up and caressed my cheek. He hadn't reached out for me in so long, it was the sweetest feeling in the world.

I saw my friend Brother Joseph who had his daughter with him while I was sitting with Ryan and Amanda in the sun room waiting room and he stopped and had prayer with us. He has been so good to me, both last year and this year.

That's all I can think of, even though I have 3 pages of notes in my little notebook. And now, I'm going to get this posted and make my bed and call it a day. The girls are leaving tomorrow, Joe and Rodger both left today. And then it will be back to just the two of us.