I'm finally getting around to updating this. I had an episode of acid reflux in the night and ending up throwing up all over my bed and me. I know, too much information. And every time I moved I was drenched in sweat. So, instead of getting up at the normal time to get ready to head to the hospital, I fed the cats and then laid down on the couch until I got cold and then went back to bed. And before you start thinking about going to bed in vomit, I did change the sheets and my pajamas in the middle of the night. So much fun when you don't feel good.

I have talked to Bill's nurse and she said he had a good night according to the night nurse. Lizzy hadn't seen to do her assessment when I called, but she's another really good nurse and will call if necessary. I told her I didn't know if I would be there or not, I would just play it by ear.

I am feeling better after a little more sleep and have kept some coffee down and a little breakfast. My head is winning out over my heart so far today and I'm staying home to get the bedding taken care of from last night and some more laundry. 

And now for yesterday. Bill was more responsive again yesterday. His blood pressure was still staying low, so he got more albumin in the hopes that it would perk him up enough to start reducing the amount of Levofed he was getting, and when I left yesterday afternoon, it had come up and the Levo had gone down from 9 to 7.

He had an episode of sinus tachycardia that was a little alarming, enough that Dr. Edwards wanted "a 12 lead" on him. This is the number of leads they put on to detect heart activity. They ran an EKG from it and it only showed the tachycardia. This is when the heart beats quickly with lots of extra beats thrown in. He had just had 3 breathing treatments and one of them was Albuterol, and anyone who has used a rescue inhaler or nebulizer with it knows that for about 10 minutes you do get a rapid heart rate and sometimes the shakes. His heart rate did drop again and everything evened back out. Also, one of his new nebulized meds, and they are both broncodialators, has only been on the market for about 3 months, so who knows, that could also have caused it. But, all was well over all with the heart and Dr. Edwards was on top of it.

I got a call from the palliative care nurse we have been working with. She usually checks in weekly, and it's usually in person, but she's immune compromised, so she's confined to the office. She said that Dr. Edwards was concerned that I thought Bill was going to eventually go home! I told her I knew that he wasn't leaving the hospital for a couple of months now. We came to the conclusion that it was all due to the paperwork about home health. Cynthia said she couldn't believe they brought that now! We talked for a few minutes and the plan is still to let Bill make any decision about terminating treatment, but if he becomes unresponsive again, and not just unresponsive like he did this week, with coming out of it after a few hours, but unresponsive as to pain also, then we would stop the medication to keep his blood pressure up, put him on trach collar, I assume sedate him, and let his blood pressure keep dropping until he is gone. And, unfortunately, I think that time is now coming sooner rather than later. I'm really glad we made the decision when we did and gave the kids the chance to see him when we did, because with the virus, there is no way they could come now.

Bill did wake up, fully awake yesterday afternoon, after the second bottle of albumin and winked at me. He also squeezed my hands and then really reacted to pain with the nurse. I actually thought he was going to break my hand he was squeezing my hand so hard! She was changing the dressing around his peg tube, which was saturated. It had really started draining again, but we think now we know why. It has a balloon inflated inside that holds it in. Rachael could pull about 3 inches of tubing out before the balloon reached the site where it enters his body. So, she pulled it until she felt the resistance and then, there is a little plastic piece that fits, or is supposed to fit close to the site, she placed that and voila!, no leakage! Such a simple fix, if it worked, that no one else thought to try! But, his skin from under the dressing was oozing blood and horribly red. But, that's what bile does, it breaks down tissue and it was just laying on his skin. That's when he really reacted to the pain, when she was cleaning that. But once it was done, he calmed back down and relaxed again.

I admit the last few days have been tough ones again, with lots of tears. But, I got a phone call from a friend that made a big difference! You know who you are and how much it meant!

So, that's how it was yesterday. I still don't know if I will attempt to go this afternoon or just take it that no news is good news and he's holding his own and go in the morning, in the rain. But, that's nothing new. As I said, my head is winning out over my heart wanting to spend every available minute with him, at least for now.

I'll keep you posted when I know something and since it's the week-end, the internet at the hospital will work better. There probably won't be another update until tomorrow night or Monday morning, unless something happens. And now, the dryer has been buzzing at me for several minutes now so I'd better head to the laundry room!