I had to re-read the last post to catch myself up! The last 2 days have been very boring and with computer problems at the hospital, the updates just didn't get done. Then yesterday I spent all evening on the phone, which took up by blogging time. But, here I am now.

Thursday wasn't that great a day, but it wasn't a bad day either. Bill slept most of the morning. I don't know if he was awake a lot in the night or what the cause was, but he just wanted to sleep. Of course, we all know that sleep is one way of our body healing itself, so sleep is good, as long as he still responded when necessary, and he did.

He perked up in the afternoon some and interacted with me and the nurses and watched a little TV. I can always tell that most of the nurses on the night shift are male, the TV will be on ESPN. Bill is not an ESPN watcher unless there is a baseball game on so he doesn't fit the stereotype.

Yesterday was a complete turn around. He was awake and very aware when I got there. All of his numbers were good and he was very "chatty". He shook drs. hands and answered questions, back to the old Bill except for the fact that he actually talk. But his numbers were good, nice and steady.

Dr. Threlkeld said that the antibiotics have been stopped and he'll just monitor for now. He's still on the inhaled antibiotics and they have made a huge difference. Andrea, the respiratory tech yesterday, said that to her the secretions are thinner and not as much. They are still pink tinged, but not the bright red they had been that alarmed us all. We talked about him being just irritated from the bronch and then, since he is on blood thinners, may just be seeping a little blood still. 

I noticed yesterday that is urine is bloody again. So far no-one seems too concerned about that. He's been complaining that his back hurts, low in the kidney area, but I don't know if that's what it is, or if he's holding back with bowel movements since he refuses to use a bedpan and they won't let him use a bedside commode. It's got to be embarrassing for a 77 year old man to just go in the bed. You can't unlearn those habits overnight. We're having the same issue, kind of, with using the condom catheter. He keeps reaching to hold himself which sometimes causes the catheter to come off. At least that tells us that he still feels the urge to go.

Dr. Smith was very pleased with the way Bill looked yesterday. They have adjusted the vent some. It was set for it to give 24 breaths per minute and they turned it down to 16, quite a drop. But, they now want him to start using his lungs more himself. He was still doing fine as far as his numbers went when I left yesterday. Dr. Smith also said that we'll keep him perking as long as possible, or until he stops responding or says to stop. I'll be sorry to see his rotation end this week-end. I don't know who will come on as they have a weekly rotation. But, the patient in the next room is having lots of lung issues also. He's been bronched 3 times in the last 4 days, so maybe Dr. Smith will stay on a few days. We can only hope!

Bill was messing with his remote yesterday afternoon, and he hadn't touched it for a week or more. He was changing channels and calling the nurses by mistake, thinking that the top button was the power button. It may have gotten pretty interesting after I left!

They have started screening visitors at the front door, only taking temperatures for now. I don't know what the protocol would be if the temp was higher than the limit they have set. I don't know if they would turn the person away or take them to another area for testing and/or questioning. I don't want to find out!

I found out that Caleb is not leaving until next month, on the 15th. He's in the National Guard and they are being deployed to Germany to replace a unit from South Dakota training troops near the Czech border. He'll be gone about 14 months altogether. He's never been to Germany so I was telling him some places to go. I'll still miss him...if we're still around then.

I'm going a little later today than usual. I woke up with an upset stomach and a slight temp. It's under what's normal for most people, but higher than mine usually is. I'm feeling a little better now that the medicine has kicked in, but I want to be sure. I'll call the unit in a little while and let them know to tell Bill. If things go back to normal later I may go down. I've had acid reflux every night for the past 3 nights, and part of that is from sinus drainage. The weather has been so crazy. Thursday it was 72 and windy and then the storms came through, or at least they were in the area. If we had any I slept through them. Yesterday it was 50 and windy. So, I'm going to just stick around the house for a bit longer if the temp goes down. No need in driving all that way to be turned away at the door.

If the hospital starts restricting visitors, I hope they make the decision while I'm at the hospital. I have about 4 days of clothes and meds there already and I will just stay and let Em take care of the cats. I don't think they will do that, but who knows.

So, that's how the last 2 days have gone. It was a very good day yesterday and I hope it's as good for him today. He won't like it that I'm not there, but I know he'll be taken care of. And now it's time for trip #5 or 6 to the bathroom. I'll keep you posted!

After yesterday's bronch, I had high hopes for today, but was disappointed when I came in and he was gasping for air with his heart rate in the 120 range and his oxygen only at 89. But, I could tell he was just panicking for some reason and when his nurse came I told her he needed some xanax. I caught her before she gowned up to come into the room and she didn't question anything, just made sure she had it with his meds.

I asked him, as I always do, if he wants to keep fighting and went over what we would do. I told him it was alright, that I would let him go, even though it would be hard. And today, at first he said yes! When I asked again he said no, so I asked a third time and again it was no.

It took awhile for the xanax to kick in, and the effect didn't last long, but at least he wasn't gasping as much. Dr. Threlkeld said that the antibiotics will end either today or tomorrow, but overall he looks good. The resident with the lung group that is following him said that pseudomonas has already shown up in the samples they took, but he didn't know if it was the same strain or not. Sharon, his nurse, told him that they are seeing a little blood when they are suctioning, and he thinks it could be due to the bronch and the fragility of his lungs. He coughed quite hard a bit ago and it was also bloody. So, we'll just keep an eye on that.

The resident also mentioned that they are talking about moving him back upstairs again and I told him I had no idea on that. I also don't know how I feel about that. He also mentioned palliative care and I told him the plan. He thought it was a good one, that if Bill just stops responding for me to take over to make the decision. And since the decision has been made, I just have to tell them.

Therapy came this afternoon and Bill didn't gripe about working with them. They sat him on the side of the bed for quite awhile while they got some things ready, and then he stood and pivoted to the chair! They said that 20 minutes would be plenty of time for him to stay up and as of right now, it is just shy of 2 hours! His numbers are all good, although to look at him, he's frowning and making faces. I think he's ready to go back to bed.

I'm actually quite sad today, but for a different reason. I found out that Sunday is Caleb's last day. I don't know where or what he's moving on to, but I will miss him if we are still down here. Who's going to shave Bill? He's the only one who does it and he knows exactly how he likes to be bathed. I wish him well, but I will definitely miss him.

That's it for today. I'll get the nurse and get him moved back to bed. They are going to use the sling and we have to rearrange the room to get it all accomplished. I took some pictures and a video of him getting up, but I don't have Travis' or Jody's permission, I can't post them. But, they were also impressed with how he did!

It's been a momentous day! I know I have said I wish we could have a 1st string lung doctor and today we got one! Dr. Smith is on hospital rotation this week. I missed him yesterday with having to leave early.

He came in this morning when Bill was getting his breathing treatment, and he had added the nebulized antibiotic again. He said it will get to the pseudomonas directly while the IV antibiotic can't as easily. He went over everything he was getting with Mike from respiratory who was getting things set up.

Bill's numbers have been staying low all day and he just seemed to be struggling. I saw Mike bring a bronch kit by and he just left it inbetween Bill's room and the one next door. The patient next door is new and lots has been going on in there. I had also seen Dr. Smith go into that room, but it wasn't until Mike went in that I knew the bronch was for over there. Those usually only take 15 minutes or so and when Dr. Smith came out he came in here and asked if the treatments had helped. I just kind of shrugged my shoulders and he looked at his numbers. He asked how oftern they were bronching and I, erroneously, told him that he hadn't been bronched since Jan 7. That was the last time he had been bronched before he went up to Restorative. He said he thought he needed it done and I told him I had known it for 2 weeks. And, it's been 2 weeks since the bronch when he was brought back down, so I'll have to tell him. He said when he listened to him yesterday he thought he would need one. I did tell him we were eventually going to palliative care and he said that he still needed to be comfortable and called Mike and told him to bring a disposable kit in. I guess it's easier on the lungs.

When I talked with him after it was done, he said there were no mucus plugs and the secretions were not especially thick, but both lungs were full to the upper lobes. They lavaged and cleaned out a lot of stuff. I hope none of you were planning on pea soup for dinner because that's what he equated it to, just meaning the color.

Bill is still sleeping off the drugs some and his sats have gone back up a little. He's still coughing up some of the saline. I asked him if he wanted to be suctioned and he said he would be OK.

His urine is still a little pink, and when Lizzy emptied his collection bag, it looked more like the color of tea instead of cranberry juice like it had. Dr. Threlkeld thought that the ruptured cyst on his kidney sounded like as good an explanation as any. He's going crazy with all of the coronavirus news coverage and said that he got roped into a news coference yesterday. I told him I saw another doctor on the news I watched last night and he said it depended on the station.

The hospital has added additional precautions for employees. There is now a testing station for employees only and I just heard the nurses talking that if they have a temperature of 100.4, they will be sent home. While I'm glad it's being taken seriously, I'm still more concerned about the flu.

One thing that bothered me today is that during rounds, when they got to Bill's room, Lizzy pulled the door closed, which is very odd. They don't talk loud enough for me to hear anything anyway, but this makes me wonder what they especially didn't want me to hear. What they all need to understand is that, until Bill cannot or does not respond anymore, or if he says he's ready to go to sleep and wake up in Heaven, treatment is to continue as is. That is what the family told the palliative care nurse in our meeting on Saturday. And if they think I don't know that he is dying, they don't know me, and you would think after 116 days in this place, they would know me by now! I do get emotional at times, but I'm also a realist and know that it's coming. Unless God decides to perform a major miracle, and I know that He is quite able to do that at any time, I'm not one of those that is going to refuse to accept the obvious.

He's still sleeping and I'm not sure if I'm staying at the hospital tonight or not. I'm leaning on going home since he's more comfortable now and I know I'll sleep much better at home, even with Cat on my pillow. She leaned over and liked my mouth last night...and then bit my chin! Just telling me she loves me!

I was totally shocked when the alarm went off this morning! I went to bed a little before 10 and went right to sleep. I got up a little before midnight to go to the bathroom and then I don't remember anything until the alarm went off! I never sleep like that and haven't for probably 20 years, even waking up when I roll over. I must have really been tired and not realize it.

Bill was a little agitated when I got there this morning and I had a hard time calming him down. The breathing treatments were started again and after he had it, the tech, one we hadn't seen before, said she was going to do his chest percussions. I thought she was just going to turn the bed on, but she did it the old-fashioned way with a hard rubber cup that looked like an oxygen mask. All I could think of was our agreement that he wouldn't have any chest compressions if his heart stopped! She was using a little force but not a lot so I don't he'll be any worse for the wear. When she finished, she suctioned a ton of stuff out and he immediately went to sleep. He was out of inner cannula replacements, so she had to order some. When it came up, she changed everything and then he slept peacefully for a bit.

He did complain that his lower back was hurting. They tried moving him and tried setting the bed for it to randomly inflate and deflate. Unfortunately, it deflated and left him sitting in a hole. Finally got him out of it and he asked for something for pain, so he got a shot of dilaudid.

I ended up having to leave early to take care of some business. Emily and Brianna have been great at doing things for me, and I was going to transfer some money from my credit union account to Brianna's credit union account and have her take care of it for me. But, they've changed their policy and it can only be done over the phone if one of the people is on both accounts. So, since it needed to be handled today (and telling the person at the credit union that I was in and ICU room with a dying husband made no difference) I had to come home shortly after lunch. Bill was OK with it, but he was pretty dopy so I'm not really sure. I told him I didn't know if I would be back today or not. His nurse was an excellent one we've had before so I let her know and she said she would call if necessary. And, since there have been no calls, I guess things went well. I could always call to find out, but I do trust them to call as they have before.

His urine has cleared some, with only a small pink tinge to it now. To look at it in the collection bag, it just looks like it's really concentrated. I saw no doctors today at all, so I couldn't ask any questions or see what they were thinking. I'm hoping Travis came in after I left for therapy. Maggie was going to give him a bath. She said Bill had declined it with night shift. She knows how to handle him so he'll get his bath.

We were notified yesterday that there is/was a patient in the CVICU next to the transplant ICU who has tested positive for COVID-19. We were assured that the patient has been in isolation the entire time and there is no chance of infection. I'm not concerned about it. I'm more concerned about the flu.

When I checked the mail yesterday there was an envelope of Medicare EOBs. They don't come in small envelopes anymore and this one was for just Part B and was 150 pages! Plus, I got a smaller one today with both parts A and B. I'm glad we've also got Tri-care!

That's it for this one. I'll get a good report tomorrow. I'll have the nurse look at all the notes for me from today. I hated missing the doctors, but, a girl's gotta do what a girl's gotta do! The rain waited until I got home and it's a miserable night so I'm glad I decided not to go back. The cats have both been clingy tonight, taking turns on my lap and I'm getting the evil eye from Mouse because I have the laptop there now. Cat is behind me on the back of the loveseat patting me on top of my head for attention and Mouse is just waiting for my fingers to quit moving. Little do they know I'm going to hop in the shower as soon as I'm done, which is now! Goodnight!

Last night was better as far as Bill being awake and bad. His nurse, Harding, who I said I wasn't fond of, turned out to have learned a lot in the year since he had taken care of Bill last year. He was very quiet, and I barely heard him in the room. There was only 1 time he had to turn the light on and I was already awake to use the bathroom.

Bill didn't have a good start to his morning. He was junky and coughing stuff up. It would get into the first part of his tubing and then as he took a breath for another cough, he would suck it back into his cannula. His sats were hanging out in the upper 80s, low 90s. 

Dr. Mehrothra (and I don't think I spelled this right and I'm too lazy to look it up again) came in early and said they didn't think any more bronchs would do him any good. That kind of surprised me, and I didn't really know what to say. He just said if I needed anything to let them know.

When the girls got there today and I told them, they both said that wasn't what palliative care told us, and it wasn't. They said that until we turned to the comfort care, all current treatments would continue. And they did say that. So I told them I would ask Dr. Edwards as the attending when he came in.

Bill had a good visit with the little kids until they had to leave. He and Petra winked at each other and blew kisses and waved and he and William shook hands. He gave a thumbs up to Jack, a hearty handshake to Lee and hugs and kisses to Dani, Aimee and Mary Rose

He kept telling me that he wanted the vent off so I bit the bullet and told him that it couldn't ever come off. I had been telling him that if it came off he would die, but it was always in the context of when he could use regular oxygen. This time I didn't qualify it, just told him he would die. I also told him if that's what he wanted then we would give him some medicine and he would go to sleep and when he woke up he would be in Heaven and named everyone he would see. He then told me he didn't want to do that yet. I told him I loved him and that he was my favorite husband of all my husbands and got a laugh out of him.

Dr. Nowak from Infectious Disease came in and, even though she was concerned about the blood in the urine, she didn't order a urine specimen, but she did order a sputum culture. I did notice in the late afternoon it looked like the urine was clearing so maybe whatever it was had rectified itself. He did do some complaining about his back hurting. It could have been from laying in the same position, the problem with his kidneys or not having had a bowel movement for a couple of days. It's hard to tell.

After the kids all left, it just seemed very quiet in the room. Bill did ask to be suctioned and said that his chest hurt. Kellye put a little saline into the vent and then suctioned and got a bunch of stuff out and he felt better, his sats came up to the mid 90s and he went to sleep and looked very peaceful.

As I sat there quietly, I started thinking about what the lung doctor had said and realized that he had not had a breathing treatment all day. So, they must have decided that all treatments were useless.

I decided to come home this evening, but wanted to talk to Dr. Edwards, so I waited to see if he came in early. He came about 3:30 and he asked if Bill had been talking to me. I told him yes and about the interaction with the kids and then said I had a question for him. After he listened to Bill, I asked about the bronchs and no breathing treatments. He said he would get the breathing treatments started again immediately especially since they are non-invasive. He did say that if he got really junky with thick secretions, of course he would order a bronch. He said our lung group is more conservative that the group with Dr. Williams, and that almost every bronch Bill had been given this time had been on his (Edwards) order. So he said if Bill needed a bronch, he would see that he got it! Now I've got to come up with a different name than Dr. Arrogant Ass. Maybe Dr. Get'erdone!

Bill was OK with me coming home and it was odd getting home while it was still light out, even though it was after 6 when I got here. I had to stop at Walmart before I could come home and then got a sandwich from Subway for supper. I had meant to take half of it for lunch tomorrow, but it was so good, I ate every bit of it!

I've been informed that everyone has made it back to their homes, so things are as normal as they can be again. The cats were both very happy to see me. Kitty followed me around the house everywhere I went and Mouse just laid everywhere and meowed.

I don't know if I'm going to keep staying at the hospital or if I will start coming home again every night as it is not as critical with Bill now, unless the tests and regular labwork show a new problem.

It was a decent day with few tears, but not as many as yesterday. Maybe tomorrow there won't be any! I've done everything I needed to do here at home and even though it's almost 9 I'm not tired. Of course, it's really almost 8 so that could explain it. It's supposed to rain tomorrow naturally since I'm going to be on the road again in the morning, but what else is new.

I've been hearing a new song for a few weeks now that is really speaking to me. Part of the chorus is "If I have to be broken by the storm I'm standing in, just to run back to your arms to make me whole again. And if the thorn in my side...helps me keep the cross in you, Whatever it takes Lord to keep me close to you". Sometimes I've felt like I've been totally broken into a thousand pieces, yet He always puts me back together and the glue is stronger than each time before.

So, that's it for tonight. Hopefully we'll both have a good night. I did remember to already turn the alarm back on for tomorrow morning, even though it would be nice to just wake up like I have the past two mornings. Unfortunately, that will be a possibility in the near future, but thankfully, not tonight.

I got permission to post this picture of Bill with the 2 youngest grandchildren, his namesake William and his little sister Petra.

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.

It was another good day! Although the night was something else entirely! I couldn't get the recliner to recline, so I mostly curled up and slept with my head propped on my hand sitting up. I woke up just about every time someone came in, although I must admit, Cole was very quiet, as was the respiratory tech. I did forget to turn off my alarm on my phone, so when 4:45 rolled around, off it went. I've already taken care of that for tonight.

I talked to Dr. Edwards and he was having a hard time breathing. And the morning wasn't as good as yesterday to start. Dr. Edwards said that we are stuck with him this week-end! I didn't see Dr. Aswan at all today, but Dr. Threlkeld said that it looked like the germs were responding to the antibiotic and he thought he would keep him on for a bit longer than usual. Dr. Muir said that all of his blood numbers were good and he would keep watching those. And then family started showing up.

Grandson Rodger and his wife Diana, along with our youngest to date great-granddaughter Ariyah were the first to arrive. Diana and the baby sat on a chair in the doorway since the baby is only 15 months old. But she and grandpa blew kisses to each other and wave at each other, and Bill winked at her. They didn't stay long, but will be back again tomorrow for a short visit before heading home.

The next to come were Joe, Tina and K'zalee from Texas. We had a good visit and while we went and had lunch, PT and OT came to see Bill! Travis did not let him say no, and after some exercises, he sat on the side of the bed! First time since that last time he was in ICU, if I remember correctly. And OT had him do his mouth care and he used the sponge and suction. This really wore him out, especially after the visits, and he took a lengthy nap. I also dozed some before the next visitors arrived.

Aimee, Lee and Dani were the next to arrive, with Mary Rose and William not long after. Jack and Petra decided to stay at the hotel. Bill interacted with all of them, including laughing at a corny joke from Lee...what is the leading cause of death in old men? old women! It was a nice family visit. When Aimee and Lee left to meet Rodger and Diana for dinner, Mary, William and I went down to get something before the cafeteria closed. We brought it back to the room to eat and sadly, Bill looked longingly at the food. Mary was really tempted to give him something, just a taste of something, but she managed not to. She and Bill did have a little private conversation, her just letting him know that she wanted to check not only on him but on me and that she would make sure I was OK. They left shortly after that and I could tell Bill was exhausted.

His night nurse is Cole again and he met me in the hallway after getting some ice. He had gotten report from Mikayla and he just wanted my input on the day too. He said it was too bad that Restorative had not followed up with more vigorous therapy and he was so glad Travis had come and worked with him. It's too bad that it's Friday and he probably won't get any therapy over the week-end.

Bill told me he had to use the bathroom and when I was showing him that he could just go in the tube that was there, discovered that the condom catheter was coming off. It took Cole 2 different catheters and some help to get it on, but he thinks he's finally gotten it securely on.

Tomorrow everyone is coming back, in addition to Emily and her crew, Ryan and Amanda, and Mistie and the kids. We are all going to be worn out! I've cleared it that we can use the conference room and visit in shifts if necessary. This room is small and can only hold so many chairs.

His nurse tomorrow will be Mikayla again. She's been really good with Bill and he responds to her really well. At one time telling her something about his wife and pointing to me. But, we neither one could figure out what it was.

We're still in a holding pattern as far as palliative goes. They are peeking in at him and making sure all is well, but they are also not pushing to make a change in treatment to comfort care. Bill is lucid enough that he could deny the change. This probably won't last, although he's fooled us all before, and then we'll move forward. Cole is thinking they will be getting him on his feet before long to get those lungs sully inflated.

Mikayla and I noticed that there has been a pinkish tint to his secretions now, but can't say for sure that it is blood from the suctioning, or medication or just what it could be.

Since we got the chair figured out, Bill is asleep, although I may lay his bed back a little farther and then I'm going to get my jammies on and turn the TV off and the light out. As long as things are moving in this direction, I'll keep posting. For now, goodnight!