Of the current string of good days, yesterday was the best so far. Although Bill was still sleeping when I got there, when he did wake up he was fully there. He interacted with me and the nurse, but also with the doctors, answering questions and shaking hands and giving thumbs up and wiggling his toes.

Dr. Edwards decided to again try the heparin to dissolve the blood clots and to prevent any further development. Not only did he order it by IV, he also got a bolus shot to begin with. The agreement made with the urologist was that if his urine became bloody again, they would stop the heparin and the urologist would have to go in and do more work to find out where the blood was coming from. But, he said the benefits outweighed the risks. So, a close eye is being kept on his urine. And all day, it was, not clear, but not pink. It was just dark and looked very concentrated. So, we'll see what happened overnight.

Dr. Edwards also asked about him being in the chair. I told him he did not get up Tuesday, and I have told the nurses that any time they want him out of bed to just say so. Just because I sit in the recliner while he's in bed doesn't mean I won't move. So, yesterday morning Molly got him into the chair. And it is quite a production. The room has to be rearranged so that the chair can be on the opposite side closer to the vent and the IV pole. But, it was managed and at 10 he was sitting in the recliner, holding his head high and watching TV. And he stayed there for 5 hours! We watched TV, Forged in Fire, this time, and he watched everyone in the hallway because he had a perfect view out the door. He did not nap any and he was, as Mary Rose put it, he was there! For a man who was supposed to be dead 6 weeks ago, he looks pretty good.

Dr. Morris said that everything looked good. He asked about trach collar again and there is still no decision on that. The pulmonologist, Dr. Curry, has yet to come into the room and actually examine him and the fellow he has working with him just comes in and looks at the vent. I think Dr. Curry did ask Mike from respiratory about it and he just looked at me for the last time he had been in a breathing trial. I explained about the last one and said that if they wanted to try again I would talk him through it. Mike knows that works with Bill, but nothing was changed.

Bill has had to be suctioned quite a bit lately, but it is still white to clear normal mucus. Dr. Threlkeld is not concenrned with it and he's really pleased at the progress he's made in the last week.

That's pretty much it. A nice boring good day. Hopefully since he was awake so long without a nap yesterday he slept last night, although the report I got yesterday morning said that he slept most of the night Tuesday night. He would not agree to no wild parties or dancing girls when I left, and definitely said he couldn't promise any shenanigans, but he would try to behave himself!

I took this picture of him after he was settiled in the chair, and he would not smile. He had just grinned at Molly, but would not smile for me, so he looks grumpy in the picture.

Londyn, the PICC nurse, came by to check on him yesterday morning. She said she got a little scared when he didn't show up on her list of dressing changes again. She was glad to see him in the chair, too.

All for this morning. I woke up with another sinus headache. This weather is killing me, in the 80s one day and the 60s the next. I need a coat of some kind in the morning, but not in the afternoon when I leave. We're supposed to have a good run of weather coming up so maybe these sinuses will settle down. But, I'm dragging some this morning and really don't want to get dressed. The cats are even dragging, they're being nice and quiet. I had to get the water bottle after Cat last night and she is never the bad one. I also had to push Mouse off my lap last night for using my legs as his ladder to climb.

Hope everyone has a good day!

Not happened yesterday, which is good, I guess. It was a boring day, I think for both of us. Bill was awake and watching the history channel on finding the Lost Gold of World War II. It was rather interesting. 

He finally gave Dr. Threlkeld the thumbs up that he's been asking for all week. It was rather feeble to start with, but he did it. His left arm wasn't quite as swollen as it had been, but he's keeping his hand fisted so much that he has lines across his fingers where they've been bent.

His urine turned to complete blood with clots in the night Monday night, but it was starting to clear by mid morning. Dr. Edwards did call Dr. Greenberger, but urologists are a strange bunch from what I've been told. He still hadn't come by before I left so I don't know what was decided, if anything. It had cleared some by afternoon. The thinking now is that there is still some of the clot breaking up yet in his bladder and that is what is causing the blood, not a tear or anything.

Dr. Morris said that his creatinine was at 1 was nearly perfect. He was going to go ahead and order some Lasix to try to take some of the fluid off again. It's such a balancing act with fluids now, too much and he swells everywhere, but his urine is clear. Not enough and the swelling goes away, but the urine becomes bloody again.

Nothing from the lung group yesterday other than coming in and looking at the vent settings and leaving. They did listen to him and said that he sounded a little coarse again. He was needing suctioned some. He told me it was all in his throat, so he was coughing it up to the trach and then it was just laying on top of it. It's still all white which is good.

I did hear then say in rounds that his white count has come back down, but I don't know what it was. I wish they would put the app back to the way it was originally, where I got the results of all the tests when they were done. Now I don't get anything until discharge. I'm going to have thousands of notifications to look at after 5 months!

Dr. Muir said that his hematocrit was at 30. It had been at 31 on Monday, so the 2 units of blood did help. He said all the other labs looked good.

Cynthia from palliative care came by. We hadn't see her for quite awhile. She's immune compromised so they were keeping her in the office. She said she could hardly breathe. She had on one of the N95 masks, covered by a paper mask, covered by a cloth mask. I wouldn't be able to breathe either! She didn't stay long, was just checking in.

Bill did say that his back hurt yesterday. The way they had him propped in bed I could understand why and every time Lauren turned him, she left one pillow under his left shoulder which kept him pushed to the right side, even when she wanted him on his left side. She finally let him lay on his back and he was much perkier. He told me when he left he would consider no dancing girls or wild parties, but he couldn't guarantee there would be no shenanigans!

I had an email from Baptist that, beginning today, they are relaxing some of their protocols and allowing elective surgeries again and encouraging patients to consult with their doctors again across the Baptist group. Baptist has been much more aggressive in testing for the virus than other hospitals in the area according to Dr. Threlkeld. He said that every patient who presents at the emergency room gets tested, symptoms or not, and they still have a separate testing site set up in the employee/ER parking lot. I hope they aren't doing it just for financial reasons, although that is a major concern for hospitals. They did list the procedures that would be followed and I don't think they changed much from what they are now.

I don't know if you saw the photo/video of Mike Pence at Mayo Clinic in Minnesota not wearing a mask. His explanation was that as Vice President he's checked frequently for the virus and he's virus free. I don't know that I buy that. The test is very painful from what I've been told and I don't know why you would want to have it done frequently. He also had the attitude that as Vice President he could basically do what he wanted. He had been told by Mayo that he was to bring his own mask to the facility. At the same time, I'm disappointed with Mayo for letting him in without the mask. In my opinion, they should have insisted he wear a mask, and if he didn't have one, provide him with one. Then if he still refused, he doesn't get it. But, I guess the photo op and press coverage was more important. I do believe that it was all staged as the "patient" didn't have any equipment near for the plasma donation and I can't believe that Mayo would truly endanger patients in this way. But, that's just my opinion. I have seen some very hateful comments on any story on social media from Mayo and until an explanation is given from them, people are going to think the worst. I will still trust them. After all, they gave me 8 more years with Bill than I would have had.

That's all for this time. We had some storms in the night, it's very warm outside for this time of morning, but it should be starting to get light and it's still pitch black. Going to be a wet drive this morning.

Yesterday again was pretty quiet. Even the whole unit was quiet and most of the rooms are full. It's just been a different atmosphere since the pandemic started.

Bill was awake and watching movies when I got there. I had put the TV on Starz Encore over the week-end after I got tired of crabbing in the Bering Sea and renovating homes. There have been some decent movies on, like Saturday Night Fever, and yesterday they seemed more geared to the child in us, except for the first one Undercover Brother. But, 2 Ice Age movies, 2 Nanny McPhee movies and a Muppet Movie rounded out my day. I don't remember what was coming on after I left, but it was another family oriented one.

Bill was also responsive and talky. He's talking so fast we can't read his lips very well and after he's finished, he clamps his mouth shut like he's just made a final pronouncement on something and he's said all he needed to say!

HIs left hand is still extremely swollen and they are keeping it elevated as much as they can. Since he's moving more, he moves it off the pillow which kind of defeats the purpose. It's also seeping blood from where the PICC line was. His right knee is also swollen, and even though it's not swollen, his right arm is weeping some and seeping blood from the site where the IV was. 

His PEG site had not drained much and Sara put a foam pad on it instead of the drain sponges hoping that it would absorb better and not stick to his skin. The only time he said anything about pain was when anyone would touch it and he really reacted to that. 

Dr. Wright changed a setting on the vent to one they don't use much. It lets the computer in the vent make decisions on how much pressure to provide for each breath. It sets a target pressure and if that pressure is exceeded, the next breath provides less pressure. Or, if the target pressure is not reached, more pressure is given for the next breath. It took him a little bit to adjust to it, but his oxygen finally started staying in the upper 90s. As Dr. Wright was leaving he just shook his head and said "The man with 9 lives". I agreed and then wondered later how many of those lives does he have left?

His urine was going from pink to orange to clear and back to orange all day. Dr. Morris said that his kidney numbers were decent and he thought that the fluctuation was all due to the heparin.

I don't know what they will do about the blood clots. They will have to come up with something before his left hand explodes from the swelling. It really does look bad.

They were going to move him to his chair after I left yesterday. They said they didn't want to do it while I was there because I lose my seat then, but the recliner is in there for the patient and not my comfort. There are 2 straight back chairs that I can use and I usually put my feet on one of them. I wouldn't want to sit in them 8 hours or so, but for a couple of hours it's OK.

So that's how our Monday went. It seemed like, now that some of the travel restrictions are being lifted, at least in Arkansas, and other states are thinking about it, people have decided to stay home! Traffic has been very light the last 2 days. I expected it to be light on Sunday, but it was also light yesterday. It was very very strange. There weren't even that many trucks. It was a little heavier, but not much, on the way home, and a bottle neck in the construction site, which was open all week-end and yesterday morning when I went through. I'm not hopeful for this morning. 

There's supposed to be rain today, mostly tonight, but some this afternoon. I'm hoping to get home before it starts as it's supposed to be heavy with severe storms possible overnight. Just what we need, more rain!

It wasn't quite as busy yesterday as it was on Saturday, but Bill was wide awake and talking again. He told me I was cute when I walked in and said he felt OK. He was watching movies on Starz Encore.

The central line is in the right side of his neck. Ella said he started to give them a hard time about it until they got it numb and then he was fine. I suspect they didn't explain what they were going to do in simple enough terms and give him time to process it. 

He was not on any fluids or meds at all and his numbers looked really good. Ella said she had to draw blood twice to repeat a lab because he hematocrit and dropped from 25 to 21 so she wanted to repeat it just in case. She must have also told them to go ahead and type and cross-match because she didn't draw any more for that.

Dr. Edwards did want him to have 2 units of blood since it was such a big drop and he attributed it to the heparin which started the bladder bleed again. It doesn't seem like there would be that big a drop in such a short period of time. And the blood that was in the urine only turned it a dark pink, not a dark red, so it wasn't straight blood like before. Anyway, it really doesn't matter at this point, he got 2 units of blood. The last one was just finishing when I left last night.

Dr. Threlkeld said he's looking better and better, and there was almost nothing when Dr. Henderson wanted him suctioned. Andrea from respiratory was there when he came in. He said he sounded very coarse, but when she suctioned there was almost nothing, just a little white stuff. She said he could have sounded coarse because he was getting a breathing treatment when he listened to him which could have changed the sound.

Dr. French was pleased with the way the PEG site looked, although the skin was red again and seeping some blood. But he and Ella both thought it looked like whoever had changed it last didn't put any, or enough of the creams on it and the gauze stuck some. Then when it was checked it pulled. So, we are still just watching it for now.

Dr. Morris is the one who changed the formula back to Nepro, not Dr. Edwards. And his creatinine was 1.2 yesterday which is normal. So he was pleased with that. 

When Dr. Edwards came in he said that since clots from the upper extremities don't usually travel to the lungs it was "the better part of valor" to stop the heparin because of the bladder bleed. As our family knows, blood clots in the legs DO travel to the lungs. But, Bill has none in his legs as of the last ultrasounds, so we're safe there. He also wanted Bill back in the chair, so they were going to move him after I left.

His right arm was not swollen yesterday, but his left one was. And his scrotum was still swollen, but not as bad as before. He also ran a low grade fever. It started at 99.9 but consistently went down without any medication. He was not actually chilling, but he would go from hot to cold. We would take the blankets off and just have a sheet partially on and then he would say he was cold so we would put a blanket back on. The last check I remember, and Ella was checking it frequently, was 98.9. I reminded her that his normal was 97.5.

He told me he loved me when I told him it was time for me to leave. He said there would be no wild parties, but he drew the line at no dancing girls or shenanigans! Then he said he would try to behave! Hopefully he slept in the night since he had been awake all day, except for when we both took a little nap.

So, that's the best week he's had in a long time. I hope his progress continues. And no, I'm not thinking that he's going to get all better and get to come home. I still know that he will not progress that much, but it does make these easier for both of us.

Have a good week everyone! It doesn't seem like April is in its last few days already, but for those of you staying in all the time, I imagine it is dragging by. I actually would welcome being able to stay home, but that is impossible so there's no use dwelling on it!

So many things happened yesterday that my head is still spinning. Or is it spinning because it is so stuffed up? These allergies are really kicking my butt. After all the rain, everything has bloomed/blossomed (except for my little rosebush) and breathing is getting difficult. I almost hate to cough at the hospital, or use my rescue inhaler, out of fear they'll cart me off to the pink bus in the parking lot for COVID 19 testing!

The cats were finished and we were back in the car by 8:17 and I was on the road an hour later. Gas was 1.38 at the other end of town, where I happened to be on my journeys yesterday morning so I filled up and then went to Hardees to grab some breakfast for the road. I got to the hospital a about 10:30.

When I turned the corner into the unit, it was a flurry of activity. Dr. Threlkeld was sitting at a work station and he just said "He's awake and talking this morning" and then 2 steps later I ran smack dab into Dr. Edwards! We said good morning and then I danced around Dr. Morris in front of Bill's door and was finally in the room!

He was laying all scrunched up with his gown half off so I knew something was going on, or had gone on. I asked him how he felt and he said OK but they were being mean to him! His nurse Ella came in then and explained what had been going on.

Apparently there was something going on with his PICC line. I don't know if it was the line itself, or the swelling in his arm that was causing concern, but an ultrasound was done and there are 2 little blood clots in his upper left arm. So they pulled the PICC. They tried to get one in the right arm, that was now supposed to be blood clot free, but they kept hitting an obstruction of some sort, even though it was ultra sound guided. They tried all three veins with no luck, so they believe there is another clot in that arm as well. They managed to get a single INT in at his elbow. Dr. Edwards ordered a heparin drip to try to dissolve the clots but said that it could make his lovely yellow urine pink again. And sure enough, within 30 minutes, there it was. So, the heparin drip was stopped. He also said that if the PEG was going to be replaced, he would prefer it be done while he was in ICU (are they thinking of moving him again?) where he could be monitored more closely.

The swelling in his left arm had gone down, and continued to go down all day, but now his right arm was really swollen. His feet were not swollen, but his knees are. And his scrotum has started to swell again, so he's retaining fluid again from somewhere.

Dr. Henderson is the pulmonologist on call this week and he said Bill sounded a little congested and he suctioned him. He got out some good gunk the first time, and it was all white, which is good, no infection. The second time he got very little out, but Bill was breathing easier. He was still talking and interacting with everyone who came in.

Dr. French from GI didn't think moving the PEG tube would do any good. He thought that any new site would also not heal. There wasn't too much drainage yesterday, but Ella said that there was a lot overnight. His skin does look a lot better than it did and it's not quite as sore to the touch for him. There's still a lot of air escaping around it, but it looked a lot better yesterday.

His potassium was too high so they gave him the Kexalate to make him poop a lot. I guess that's the fastest way to do it. Dr. Edwards also changed his formula back to the Nepro from Glucerna. The Glucerna raises his potassium, the Nepro depletes it some, on top of the lasix, but it's easier to hang a bag of potassium than give him diahrrea to get rid of it. Dr. Edwards also wanted him to have some Albumin and a bag of fluids. It seems odd to give fluids to someone who is swelling like he is, but I guess he knows what he's doing, even if I didn't think so to begin with.

Time out for more coffee. OK, back to yesterday.

Dr. Edwards also wanted him in the chair, not in chair position, but in the chair. So they got a new sling, I don't know what happened to the other one but it was gone, and got him moved. He looked very uncomfortable. He's been in bed so long, and his favorite position is to have his head laying almost on his left shoulder, that he's having a hard time holding his head up. I have one of the pillows that goes around your neck so we used that to see if that helped, but it didn't help much. They didn't recline the chair any, so he mainly stared at his lap for an hour. They wanted two hours if possible, but another bowel movement stopped that. Dr. Muir came by at that time and said that his neck muscles were just weak from being in bed so much that it was hard to hold a heavy head up again. He said that his blood numbers were all stable and his kidney numbers were still fluctuating but all in all they were stable.

When they were getting ready to move him to the chair, Ella noticed that his right arm looked really angry above the IV site and Bill said it hurt. So she took a picture of it and sent it to Dr. Edwards. He said to just watch it for 30 minutes and to remove the blood pressure cuff to see if that was the cause. But, when she checked it again, it looked worse and she was afraid that it had blown. It would still draw, and she could still flush it, but she just didn't like the way it looked. So, we're down to the last resort of having to do a central line which is placed by a pulmomologist either in the upper chest or neck. They were going to call whoever was on call for the lung group as I was getting ready to leave. They got a blank consent form and partially completed the procedure part without the doctors name so that I could sign it before I left. They moved him back to the bed and they got everything disinfected since there was stool everywhere. They had also had to rearrange the room to get the chair closer to the vent but they were putting most things back to where they were supposed to be. They left the IV pole on the other side of the bed so maybe that's the side the central line will be on.

Bill said he would try to behave in the night and I didn't get any calls, so he must have at least been stable. I hope he slept! And he may have because I think they lightly sedate for a central line. I'm not quite sure on that.

The cats were fine when I got home, not much itching, but also not much interaction with me. They neither one came into the bedroom last night to sleep. I did hear Cat wandering and meowing about 3 and then again when she saw the bedroom light come on. They've eaten lightly and she's asleep on top of my yarn storage bins. I don't know where Mouse is. The back door is closed so he can't be socializing. I'm going to wait until I get home tonight to give them (try to give them) their prednisone. Since they aren't eating a lot I can't just put it in their food. So that shoudl be fun.

I think I covered everything again. Like I said, it was a busy day. And, I'm going a little later this morning to make sure the caffeine and Aleve have kicked in for my headache. It's almost gone and the sinus drainage has lessened. When I get to the hospital, I can take some allergy medicine, which reminds me I need to fill my little Tylenot bottle again. Better do that as soon as I'm done with this.

It was extremely windy yesterday and it felt like I was driving a billboard at times, especially going across the Mississippi river bridge. It was a 2 hands on the wheel drive both directions. And since it was a cross wind, it didn't do a thing for my gas mileage!

That's it. Happy Sunday!

Here it is, almost 5:30 and I just poured a second cup of coffee! I normally would have this down to nearly the end, the coffee gone, and the race beginning to get dressed and out the door. But, today I'm taking the cats to the vet so I'm not going to the hospital until later. Of course, I'll miss all of the doctors most likely, but the vet is only open between 8 and 12 and they have to go before they go crazy with scratching, taking me with them! So, it's been a leisurely morning so far with perusing the news and email and coffee, wonderful coffee! 

OK, enough of that. Yesterday was a great day! Bill was awake and aware and chatty when I got there. And things had happened in the night! I noticed the collection bag for his catheter was different and then looked at his IV pole, and the bag of flush was gone! Dr. Edwards finally got ahold of Dr. Greenberger and the triple catheter and flush was discontinued. Sharon, the nurse, said that they finally got the order right at shift change. The only problem they had was trying to get a regular Foley catheter in place. The nurse had a hard time and they ended up using a condom cath. I'm surprised it was still on by morning. But, from the time they removed the old catheter until after noon yesterday, not one drop of urine. And he was swelling again from fluid buildup.

Dr. Morris ordered some Lasix again and a regular Foley and Sharon got it placed with no problem and within 3 hours he put out a lot of lovely pale yellow urine. There was a little sediment to begin with, but no blood at all. Of course, it wasn't pleasant for Bill, but Diane, who was observing, said that Sharon was the Foley expert.

His Levofed was stopped yesterday also. That's the medicine keeping his blood pressure above 100. It had been fluctuating between 1 and 2 since the night before, so Sharon said that she was just stopping it and would watch his pressure. If it dropped below 100 she would see if it came back up on its own and if it stayed low she could re-start it. It was still off when I left.

The GI doctor is afraid that the feeding tube will have to be replaced again. He's just waiting to see what antibiotics the bacteria responds to. The Nystatin cream and Zinc oxide that Sharon was using has cleared his skin a lot and it didn't do a lot of draining yesterday. But there was a lot of air escaping. I couldn't tell at times if he was passing gas or if it was coming from his belly!

Dr. Threlkeld said he looked a lot better, and he did. He also said not to go out and buy a handheld UV wand, or God forbid, start drinking bleach or rubbing alcohol. I cringe to think that some people will actually do that! 

Dr. Okpor did his usual thing of looking at the vent, writing down some numbers, nodding his head and leaving. I saw Dr. Henderson on the floor as I was leaving so I think he's got the rotation this week. He's not one of my favorites of all of the pulmonologists as he was ready to give up on Bill while he was in restorative care. 

Bill told me he would try to behave overnight, so he was interacting. And he responded to questions from the doctors or nurses. He did well with moving during his bath and getting settled into new positions.

I told Crystal the respiratory tech who came to visit him that I wouldn't be there this morning and she said she was working and she would remind him. I also told him, but I doubt he remembers. I told the secretary Rikaya also and she said they would remind him periodically. I'm hoping to be one of the first ones in (going to sit in the parking lot before they open) and then, after dropping them back off at home, hitting the drive through at the credit union and then on my way.

That's about it. I don't think I left anything out, of any importance anyway. If so, after I've looked at my notebook when I get to the hospital for today's notes, I'll include it in the next update. Until then, have a great week-end!

Another day of a whole lot of nothing going on. Bill was sleepy most of the morning. He was awake when I got there and he was mouthing something but I couldn't make it out. All of his numbers were good and his Levofed had been turned down to 2 from 5. So, they must have been adjusting it through the night.

His belly is still draining copiously at times, which irritates where the little open sores are. The creams aren't helping a whole lot because it's still staying too moist. Even trying to hold gauze on it at the top while putting the cream on the bottom doesn't seem to work. I hope they kept it clean during the night. The Dr. said that until we get the final lab results to see what is actually growing, we have to just keep treating as is. He did say that the tube may have to be changed again if it doesn't stop.

I had a thought on the way home about all of this, brought about by our friend Pete having to be readmitted to have his gall bladder removed. When they did the original ultrasound before the tube was replaced initially, when he was vomiting, one thing Dr. Edwards was concerned about was his gall bladder. The Ultrasound did show fluid in the stomach, whether it was actually in the stomach or the abdominal cavity is unclear to me, Dr. Nara said stomach after she quickly glanced at the report. I remember when my gall bladder was inflamed before having it removed and I would vomit a lot. Also, what is draining is just bile, no formula which has been increased, so my question is...could the gall bladder have something to do with this drainage and it has nothing at all to do with the feeding tube at all? I'll have to ask that today.

I saw no pulmonologist yesterday at all and the other doctors and practitioners are wanting to know if they are going to put him back on trach collar. My standard answer now is I haven't seen anyone from pulmonology yet, along with they haven't said one way or the other.

His urine was finally clear again yesterday and his kidney numbers are fluctuating, but not enough to really concern Dr. Morris. They can be controlled with more/less fluid or more/less lasix.

HIs nurse put in a call to the urologist since it has been at least 3 weeks since they removed the clot and she's getting concerned that the Foley has been in too long, since this is a bigger one to accommodate the tubing from the flush. She had not heard back so she asked Dr. Edwards if he would call. The order only said to run a slow flush.

Dr. Mullinax from palliative care came by. He said every time he had come when I wasn't there Bill always indicated that he wasn't in any pain. I told him that I also ask if he's ready to call it quits on all the treatments and he always says no. So, in Bill's time, and God's time, we keep moving along.

Joseph, one of the chaplains, came by while I ran to the bathroom and had prayer with Bill. We talked for just a minute and he said I'm the true hero in all of this. Of course I immediately disagreed and he then compared me to the wife in Proverbs. Again, I don't see what I do as anything special.

Bill was more awake in the afternoon, so I don't know if he just didn't sleep much in the night, they did leave the TV on again, but he was getting sleepy when I was leaving. Maybe he slept last night and will be awake more. Dr. Threlkeld did say that when he has a really good day like he did Tuesday, then it takes him a day or two to recover. 

That's about it. I was going to make a sign to put up for him tomorrow to let him know I'm taking the cats in the morning to get some allergy shots and flea treatment. The vet opens at 8 and I'm planning on being the first one in the door, if possible. But, I didn't get it done. I was really tired for some reason last night so just sat and did nothing.

I'll let you know how today goes. Oh yeah, therapy did come by yesterday and they did just a few exercises and then he sat on the edge of the bed for about a minute. Even if all they do is range of motion it will help. OK, now that's really it!

There's not much to say about yesterday. He was not as awake and aware as the day before, but he was more awake and aware than other days. So it doesn't seem like the transfusion did its magic this time.

He was awake when I got there and said he felt a little better. But, then he went back to sleep for most of the morning. When he was awake, he was engaged, but by mid afternoon, even Mikala noticed that he was awake but didn't seem to be processing questions.

The results of the culture of the leakage showed yeast, a fungus, and some white cells. So, the doctor ordered some more Nystatin cream to put around the site and then an oral antibiotic. Hopefully those will help some. His poor skin is still bleeding from where the moisture lays if the nurses on vigilant enough to keep check on it. I asked about an abdominal binding and was told they would only use that if he started pulling on it. When Mikala changed the dressing before I left yesterday she only used 1 small piece of tape and did not have the tube laying flat against the dressing. So, we shall see what happens.

All of his numbers were good and since his blood pressure was holding steady she started reducing his Levofed again. That's the IV blood pressure medicine. Hopefully they are able to get that stopped.

Nothing was changed as far as the vent went. Dr Okpor just looked at the numbers and asked if I had any questions, but when he doesn't give any hint of treatment or his thoughts on things, what is there to ask? I know a lot of things now about how these things work, but I'm still not a mind reader. All I can say is there should be a new pulmonologist on today so maybe I'll get some information.

He did sit in chair mode in the bed for about 4 hours and Dr. Okpor does want therapy started again. He apparently didn't read in his chart where OT signed off on him untill and unless he showed some kind of major improvement in even range of motion. He has been moving his arms more and is finally back to reaching his nose to push his glasses up, but he doesn't move his legs much. Of course not only does he have the vibrating things on, he also has on those heavy boots to keep his heels off the bed.

When I got ready to leave he was very awake and aware again. He had been watching everyone out in the hall. There was a lot of activitiy going on in the room next to his, and these to rooms are in the corner and are angled so you never know which room someone is going into until they head for the door. He was probably wondering what they were going to do to him next. He told me he loved me after I told him I loved him and he got a screwed up look on his face when I told him to behave. He wanted to know when I was coming back and I told him today.

I'm taking Emily's car today. Bryan is taking my to the shop for the 100,000 maintenance and an oil change and all that good stuff. It's really windy today so I don't know how her Charger will handle and since her car sits lower than my SUV it should be fun.

That's it for this time. Seems like I said a whole lot of nothing in a lot of words. I'll let you know what today brings!

Bill was awake when I got there this morning and when I asked him if he felt better he nodded and said "a little". He stayed awake all day and he watched TV for the first time in I don't know how long. 

Dr. Threlkeld asked him for a thumbs up and he looked at him and shook his head no! So they shook hands, and then he gave him a thumbs up.

After I left yesterday, he apparently got a bag of fluids and some albumin, which could account for his awareness today. Austin, his nurse for the day, was repeating his labs as his hematocrit had dropped from 24 to 19, which is quite dramatic. When the new labs came back, it had dropped, but only a little, so Dr. Edwards just wanted to keep an eye on things.

Dr. Morris was not happy to see that his urine was bloody again. He said that his kidney numbers had improved, but he's concerned that he's staying too dry. It's been a real balancing act to get the right amount of fluids in without causing him to swell like before. So, he was going to increase the amount of flush he gets with his feeding, which was restarted today. He also said that he might want an additional bag of fluid hung.

Dr. Gessller, I never did check the spelling, came and asked a lot of questions about the tube. He wanted to know if the tube feeds were just supplementing his nutrition, and I told him it was his total nutrition. The x-ray showed the dye went through the tube and into the stomach, so the tube is in place. So back to square one with the drainage. It was draining again, but not as much as yesterday. He looked at it, and it was also oozing blood from around the peg site. It was very painful for Bill for him to be prodding and he, the doctor, said that it shouldn't be painful. I told him I thought the pain was coming more from the erosion of the skin from all the acidity of whatever was draining. He wanted it cultured, so after he got finished, Austin came in and took a sample of it, which hurt Bill again.

Shortly after that Austin said that Dr. Edwards changed his mind and wanted him to get a unit of blood, and that was hung just before I left. Bill was starting to get sleepy then, so it was a good time for me to leave and he said it was OK.

Dr. Okpor, the pulmonologist, came by in the morning, looked at the vent settings, said that one of his colleagues would be by later and asked if I had any questions. Since I didn't have any idea of what his plans were, there was nothing to ask. I also didn't see anyone else as far as pulmonology goes.

All in all it was a good day, compared to the last 5 days. Let's hope that tomorrow is just as good, if not better!

Yesterday was another turning point! Bill was more awake yesterday morning and shook his head no when I asked if he was feeling any better. He was still squeezing hands and feeling pain, really feeling pain, and we'll get to that in a minute.

He was breathing a little fast and his heart rate was in the 110-120 range. He also sounded a little wheezy. Tyler from respiratory came in and change his inner cannula and all the tubing and filters and that made the wheezing go away. He had suctioned him and didn't get much, so everything must have been sitting on top of the trach.

Dr. David (da-veed) came in and told Tyler he wanted to try a breathing trial! This is part of the process to get patients off vents. Now, this is for a man who was near death 24 hours prior. He told him to let it go 30 minutes and if he couldn't tolerate it to switch it back. Tyler and I both looked at each other, but when he came back into the room to do finish his breathing treatments, he switched him to CPAP mode and Bill didn't even last 10 minutes before his breathing sped up. Tyler stood right beside him and switched him back to vent mode. 

I don't have a problem with getting him back off the vent, but I think it needs to be done in a different way. My opinion, and what do I know I'm only his wife, is to change the vent setting back to volume control from pressure contol to let him feel the extra oxygen.Then put him in CPAP mode so that the pressure keeps the airway open. But, Bill is one that you have to tell that the machine is not doing the breathing, that he has to do it all. That usually settles him into the rhythm of breathing again. So, I'll bring that up this morning.

His PEG site was draining really badly again and Dr. Threlkeld looked at the site and his stomach around it and said he didn't think it was infected, just irritated. But, within 1 1/2 hours, he had soaked through the drain sponges, 2 abdominal pads, his gown, the pillow his arm was resting on and the bed pad and sheet! Luckily, Yolanda was his nurse again yesterday and she got every towel and washcloth out of the closet and was having to hold pressure on it, the same way you would for copious bleeding. She was also using antiseptic wipes to clean where the skin is breaking down from the bile and bleeding. That's where the pain came in. I was kept busy holding Bill's hands out of the way, and pushing the call button at Yolanda's request to get the charge nurse in with the "magic phone" that has all of the numbers for the on-call doctors.

She got Dr. Gessller (and I need to check the spelling, I'm going by what I think I heard him tell Yolanda when she was putting in the order for the xray.) from GI to come and look at it and he said he didn't think it was even in his stomach! So, the tube feeds were stopped and a special GI xray was done. They did a regular xray first and then pushed some dye through his tube and did several more from different angles. This should show the position of the tube. There weren't any results from that before I left yesterday, but I doubt anything was done last night because it would need consent and Bill can't give it and they didn't call for oral consent, so we'll probably find out today.

After that Bill went to sleep, and he slept, not just "out". His heart rate dropped below 100, his oxygen was in the mid-90s, blood pressure was good, maybe a tad low, but above 100 and his respirations were 23. He looked very peaceful and was finally cool to the touch. So, as awful as it was to see that junk bubbling out of him, it may have been what was causing all of the recent problems.

Dr. Morris thinks that it was the cause of the kidney number fluctuations over the last few days. They were stabilizing again and he will continue to follow to see how they do after whatever is done about the tube is done.

His urine has been clear for the last 2 days, with no blood at all, so they may be able to put the flush on hold. Dr. Greenberger didn't say how long to keep the flush going.

The nurses have been loving the mask holders and are taking them as fast as I can get them done. I braved Walmart for the first time in a month to get more buttons and Yolanda said she bought me some yarn over the week-end. Someone used a 3D printer and made some plastic holders, but some of the ones who have used them say that the points hurt their neck some.

I'm going to have an interesting commute this morning. There is construction that started after I went through yesterday right where 2 major highways come together and it was backed up yesterday afternoon on both highways. I meant to look at the map yesterday when I got home to see if I can just take one of the frontage roads all the way through and by-pass it. I think I can, I'll let you know! Otherwise I may be sitting it traffic all morning!

It was an uneventful night. He had and "episode" this morning, but Molly didn't elaborate, just to say that Dr. Edwards wasn't concerned about it. Bill has been resting peacefully, yet responding to people and commands.

I think I've seen all of the different disciplines already. I know I've seen kidney, cardiology, pulmonary, and infectious disease. Dr. Naseer said that his kidney function has gone back down. It had gone up yesterday with whatever was going on with him. Dr. Shirwany said we will just continue with what we are doing. Dr. Schriner said there's not much more to try. The only thing changed on the vent was to reduce his oxygen from 50 to 40%. He's still on pressure control and the bicarb that he ordered hung should run out about 5 this evening. It was only supposed to run over 24 hours. Dr. Threlkeld said that the germ that has shown up was not in his blood culture, so it must have shown up in the bronch sputum. He said it is resistant to Zerbaxa, one of the antibiotics he was on, so he was switched to the merroperrem again. 

Bill woke up a few minutes ago and I held his hand and, while he was looking at me, I told him to squeeze my hand if he was ready to stop fighting...and he did not squeeze. He also kept looking at me the entire time. I've told him that I will be OK even though I will miss him. And I know that one of these times he will squeeze or nod, but it will be OK.

Someone asked me today if I was afraid that he was going to die and not come out of it this time. I told her that I wasn't afraid, I knew he wasn't going to recover. It does make a difference when you make peace with your decisions and don't second guess them.

I feel much better today, although I'm tired from sleeping in this chair. It does recline, but there's not much padding on it and it kills my sore hip. But, I slept off and on until after 7, without getting up to the bathroom, which in itself is a miracle!

I'm not sure yet if I'm going home tonight. If he stays as stable as he is right now I will go home and replenish my meds. I was getting ready to do that when Lizzy called yesterday. I do have enough with me through tomorrow. And I know I will sleep better in our bed, especially with freshly washed sheets on it. I can always come back if they call.

Here's a picture of my daily attire here in the hospital. The only time I'm supposed to take the mask off is when I'm eating, but I take it off when talking to Bill. That way he can tell it's me easier. I also take it off periodically just to breathe. And as long as I'm in the room I have to wear the gown, except when I was sleeping last night. I really don't think anyone would say anything if I didn't put the gown on at all, and at times the nurses don't gown up just to come in and stop an IV pump from beeping. Today is also my dad's birthday, so in honor of that, even though it's not mom's I got a piece of cake from the cafeteria.

Happy Birthday, Dad!

And here I am, in all my glory!

Unless something drastic changes, I won't update until sometime tomorrow.

I didn't anticipate another post tonight, but I got called to the hospital about 4 this afternoon. It's a good thing I was feeling better, although my stomach did not like the grilled cheese sandwich I fixed for lunch. 

Lizzy said that as the day went on Bill became more lethargic. They checked his blood gases and his CO2 was still high, although not as high as earlier in the week. His pH was also low so he's getting some IV bicarb to see if that will help. They changed his vent setting from volume control to pressure control and I haven't looked yet to see what the difference between the two is. 

He did wake up after I got here and talked to him, and he has moved his arms and legs and squeezed my hands. When Lizzy was giving report to Mary Claire he looked toward the doorway where they were standing, so he was tracking their voices.

Lizzy said that his PEG site was still draining, but not as much. They did do an x-ray of his stomach but it didn't show anything amiss. So, we still don't know what's going on with it.

When Mary Claire was crushing his meds, he had an episode of V-tach, which is ventricular tachycardia. That's where the heart just beats really really fast. She looked at his EKG and then drew some labs to check his electrolytes, mainly potassium and magnesium. But they were just drawn so there aren't any results yet.

His left arm is swollen again, but I haven't looked at his feet. He's got good urine output, and it looks like urine. Lizzy said it was a little pink this morning but had been clear all day. It's a little dark now, but a dark yellow, with no blood in it.

I haven't seen any doctors, and don't know if I will tonight, although Dr. Edwards could pop in at any time, I suppose. So, it may be tomorrow before I see anyone.

I am staying the night tonight. Since I got here so late, and I'm already tired from not feeling well today, I didn't relish the thought of driving home in the dark. I have enough medicine with me until Monday night if necessary. Emily is going to take care of the cats as usual and if I need her to bring all of my meds down that won't be a problem.

I did enjoy my day at home, even having to wash all the bedding. The cats liked me being home too. The front door was open and Mouse laid in the patch of sun while Cat was on top of the perch in the window, unless she was in my lap. It seemed like every time I sat down she was right there. But, that's OK, I didn't mind for the most part.

So, that's it for tonight. I'll update tomorrow whenever I know something.

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!

The only real change yesterday from the day before was that Bill responded to people by opening his eyes. Other than that, it was basically the same as before.

He had thrown up again in the early morning and it seems to be a pattern that when he first throws up it is his formula. So, his feeding is stopped. But then it changes to bile and whatever else is in his stomach. And he doesn't throw up a lot. 

Dr. Wright ordered more blood gases first thing in the morning and his CO2 is/was still high. He was sounding a little gurgly so before 8:30 he bronched him. I probably could have sat right in my little chair. I sat in the hallway outside the door and watched since they didn't close the door. I also don't think they used any sedation, but Erin could have given him something. It only took about 10 minutes. He said he got some stuff from the middle lobe of his right lung, but nothing from the left one. So, we'll see what grows besides pseudomonas.

He threw up again after that and it was all bile which was yellow/green and gray. I know that sounds gross, but your gut is a really dirty nasty place so who knows what is normally there and the colors. Zofran hadn't seemed to help, except for making him sleep more along with the CO2 being high. 

Dr. Wright used a really long word for what was going on and then he said that it was doctorspeak for his CO2 is high and so far we can't get it down. They adjusted the vent again, increasing the pressure. What that does is force the oxygen in harder to get it to the bottom of the lungs which should force the CO2 out. They didn't repeat the blood gas to see what the levels were before I left so I don't know if it really worked. But, after the bronch, Bill opened his eyes and looked at me. I don't know if he really focused or not, but they were open for a second or two.

Dr. Threlkeld said that he had ordered some blood cultures Wednesday night and was starting him back on Zerbaxa and daptimycin and would adjust as necessary. Dr. Wright also ordered two new nebulized treatments. I don't know if they are both antibiotics or not. Erin said he ha been on one of them before so I think it is, but she said the other one they had never used and had to order it from an outside pharmacy. All of those started yesterday.

Dr. Morris said kidney numbers were staying stable so we would just keep going the way we were.

I did find out that when his white count dropped so low it was 1.5. Normal is 10-12 (these are thousands) and Bill is usually "normal" at 13-15. So, 1.5 is dangerously low, in the blood cancer range. The medicine they had given him to raise it brought it up to 5. His red blood count was good. It did make me wonder if there wasn't something wrong with the blood he received on the 11th. I need to remember to ask one of the doctors that today. He got blood on the 11th and the 13th is when I noticed that something was off.

Bill stayed asleep most of the day, but he would open his eyes if someone talked to him. He had both PT and OT and they are now basically just range of motion exercises. Jody from OT came back in and said that she needed to talk to me and seemed upset. She said they (OT) were going to sign off on him for now since PT can do the same exercises. I think she thought I was going to be upset but I told her I understood. OT is more for relearning how to dress and groom and he wasn't to that point. She did say that they would continue to follow him and if he got to a pointt again where he would benefit they would certainly return, but they really couldn't justify billing for therapy when he wasn't getting any!

I also had an unusual visit from one of the case managers. She said that the doctors had ordered home health and wanted to know which company we wanted to use. I told her Kindred which is who we used before, but I'm really wondering which doctor thinks he can go home! He can't even go to a nursing home because of the medicine he's on to keep his blood pressure up. It has to be fine-tuned so much that a nurse would have to be in the room at a facility 24/7. There's also the fact that he can't sit or stand or walk. So, I don't think they want the bed for a COVID-19 patient. I doubt that Dr. Edwards would allow highly contagious patients be around transplant patients with compromised immune systems.

Before I left yesterday Bill did squeeze my hand (hadn't done that all day with anyone) and when I told him I loved him his mouth moved, and it hadn't moved all day. I think he was saying I love you too, which is what he would normally say. Maybe today he would have gotten enough of the antibiotics in to start fighting what is happening and the pressure got more of the CO2 out. I can assume that he's holding on since there was not a phone call from the hospital in the night.

There have been a couple of funny things that happened in the last few days. I'm either losing my mind completely, or just tired enough to see humor where there really isn't any. First off the buttons that I "lost" the other night. I found them when I got home yesterday, on top of the roll of paper towels in the kitchen! White buttons on white paper towels! But, at least I found them. Even though Yolanda was happy with her puppy dog buttons, I can now do more with these.

When I go home through town, I pass a dry cleaners and they have a sign out front that reads "Jesus is alive check web site for specials". That struck me as funny. What are the specials, 2 for 1 baptisms? Or maybe 50% off angel robes? 

And last night there was a crop duster headed straight for me on an angle, and I didn't think of crop dusting, all I could picture was a world war 2 movie where the single plane flies over and starts strafing the road, shooting up the convoy of vehicles! See, I told you I was losing my mind!

That's it for the latest update. I tried to do this from the hospital yesterday, but of course the internet wouldn't connect, even using my hotspot. I don't know if I'll take it today or not. But, I'll let you know when there's a new post at any rate. Stay safe!

Yesterday marked an anniversary of sorts. It was the 5 month of being in the hospital mark. This is the longest hospitalization yet.

It was not a good day and I should have expected it since there was that "something" not quite right the last few days. Bill was, sleeping is not the word, because he was not sleeping, he was laboring when I got there. His heart rate was up, his blood pressure was down, you could tell he wasn't resting. He was still on the vent, which isn't unusual, it depends on how busy the respiratory team is early in the morning.

Crystal came in shortly after me and she couldn't get him to wake up. She could also tell that he was not resting so decided that she would wait a bit to switch him to trach collar. She went ahead and suctioned him and after she did that, he threw up. We got his nurse and she said that it was reported in the night that he also threw up. The night one was his formula, this time it was bile again. Yolanda went to get some Zofran while Crystal and I cleaned him up.

He did tolerate his meds, but during his bath, while turning him, he threw up again, this time it was a clear mucus, and then tinged with a little blood. They said the blood could have come from the trauma of throwing up to get it past the trach.

The lung doctors ordered a chest x-ray (don't know what it showed) and Dr. Edwards came in and said couldn't get him to wake up. He asked if he had interacted with me and I told him no. He thought he was retaining CO2 again and ordered some blood gases drawn. Crystal did that and while I was in the hall waiting for the x-ray to get done, she came back and with the results and sure enough, his CO2 was high. Dr. Edwards ordered some Albumin, thinking he needed the blood volume bumped up and Dr. Wright increased the pressure on the vent. It was also decided to leave him on the vent all day since he was already laboring. 

His food was stopped and the bottle of Albumin was hung and pushed through in about 10 minutes. After a few hours the blood gases were drawn again and while the CO2 had come down, it was still high. So, a bigger bottle of Albumin was hung and ran for a longer period of time and the breathing rate was increased on the vent. This means that the vent was forcing more breaths through in the same amount of time. The theory behind this is that Bill doesn't exhale deep enough to force the CO2 out, so the vent, by breathing more forces it out faster.

Dr. Morris added a bag of fluid, but I don't think they are going to do it as continuously as before since it caused so much swelling.

All of the doctors, including Dr. Threlkeld, were concerned with everything going on, but he also said that his white count had dropped. This is usually good, because his count is usually high, but since they were all concerned, it had dropped too low. This can mean that his bone marrow has stopped producing the white blood cells, it could also be a reaction to medications, a new infection that attacks white cells, just lots of different things, none of them good. Dr. Threlkeld didn't think it would be caused by the Bactrim, but he said he might hold it for a couple of days. It wouldn't be long enough to kick the virus from the heart mismatch into gear since he's been on it so long, but it might be long enough to see if that was the culprit.

Yolanda had to restart the Levofed for his blood pressure as it was getting dangerously low at times, and that is a drug that you have to play with, to fast a drip and it can sent the heart racing and cause a heart attack, too low and it doesn't do any good. They just try to keep his top number above 100. It did finally stay barely about 100, but the drip was still a pretty big dose at 8. When I left his pressure was 127/70, which would be normal for most people, but they wanted it a little lower. So, she was probably going to adjust it again. His food was also started again, and she had to adjust the drip on his flush as his urine was again red. When she emptied, he didn't put out much urine, but I could milk the tubing, which is just holding it up to let the urine drain and he was putting some out and it was the color of urine again.

In the late afternoon, you could tell that he was finally resting and he was starting to respond by just nodding his head. He opened his eyes a couple of times, but never came fully aware.

I think I covered everything. It was a nerve wracking day and I was exhausted when I got home. I had been talking to Yolanda about the bands that everyone is making to save the ears from the elastic on the masks and I told her they wouldn't be hard to make but I didn't have any buttons. Well, while my supper was cooking, I looked in one of my knitting boxes and found a package of buttons, just the right size...and promptly forgot where I put them when I took them out! I have looked all over for them. Maybe I dropped them into my backpack and don't remember doing it. I did find some specialty one, footballs and puppies, so I'm taking some cotton yarn and a crochet hook with me and can make several of those today. Of course, Yolanda gets the first one!

I got through Caleb's last day with no problems, mostly because he made himself scarce after Bill's bath. He didn't get his good shave with everything going on with him, but he did get a good bath between Caleb and Yolanda. I am still going to miss him. He gives the type of care you like to see for a patient, yet he's also good with the families. 

That's it for this update. Hopefully he will have rebounded in the night now, especially since I didn't get any calls, and we'll figure out what is going on again and we can get back on track with trach collar. Of course, I'll let you know. Today may be a day to bring the laptop again in case any immediate updates are needed.

Today was a repeat of yesterday. Bill refused this morning to respond to people. I could tell that it was deliberate because he would look at them as soon as they gave up trying to get him to respond.

His numbers were all good, except his blood pressure. It stayed low, at one time it was 75/44! The Levo was on standby and I thought because it was staying under 100 that it would be re-started. But, it still wasn't when I left. He was on trach collar and was doing great with it.

He did sleep most of the day again, which leads me to think that he is staying up all night. And because there are no issues, the report the night nurse gives is that he had a good night.

His urine was finally clearing again and the flush is running at a good rate. Dr. Morris was pleased that it had cleared.

Dr. Threlkeld wanted to know the color of what he was coughing up, expecting it to be yellow or green, but it is white. He said that white is good, but I already knew that!

Those were the only 2 doctors I saw today.

There is still a problem with his private area. It is very irritated now. They have been trying a mixture and combination of several creams and ointments. They got him turned completely on his side today to get him off his rear. I didn't look, but Caleb and Toya were pretty concerned with what it looked like during his bath.

And, that's pretty much it. Bill would respond when he wanted to and ignore people when he didn't want to. I'm hoping that he will sleep tonight and will be awake tomorrow. We haven't seen therapy this week, I haven't even seen any therapists in the unit, so maybe he'll get some tomorrow and he needs to be awake for that.

Tomorrow will be a hard day for me. It's Caleb's last day before his deployment training starts. He's been so good to both of us, but especially Bill. I imagine he'll give him a good shave tomorrow. I tear up every time I think of him leaving, so I'm hoping that when tomorrow comes, I'll have gotten used to the idea. I'll just blame any tears on allergies! My eyes itched and burned all day today anyway.

I'll let you know if tomorrow is any better.

There was something off yesterday, but I can't pinpoint what it was.

Bill was awake when I got there, but that seemed to be it. He was still on the vent and almost as soon as I arrived, he went to sleep. His numbers were all good and the only thing I could see was that the Levo was running again, so his pressure must have dropped and stayed under 100 for awhile. Mike came by to check his vent numbers and then suctioned him and switched him to trach collar.

Dr. Threlkeld came by and I think he could tell that something was off, too. He said maybe he was just tired from working so hard to breathe and needed a day off. He looked at his PEG site and ordered the 2 antibiotic creams to be used on it. I didn't look at it, but there wasn't a flurry of activitiy around it, so I don't think it was draining again.

Dr. Morris has gone back to Lasix once a day instead of twice, and he wasn't too thrilled that his urine was again bloody; Dr. Hassan was in the room for about 2 seconds. I told him that something was off and he looked at everything and said we will just continue with the way things are. 

I noticed throughout the day that the back of saline that is used to flush his bladder was a new one and when I left at 4:30 it was still completely full. I couldn't tell if it was dripping at all, So I mentioned it to Tyler when I was leaving and she said she would check it. I have a feeling that when it was hung, it was never turned on. So, now we are kind of back to square one with the bladder. They worked really hard over the week-end to get a happy medium of flow, not too fast, not too slow, and it had worked with clearing the urine nicely.

He's not swollen anymore, but he will hardly try to raise his arms now, and he was doing that over the week-end and the last few days. He did give me a double wink in the morning, but in the afternoon, after he woke up, I had to take my mask off when I talked to him. He seemed a little disoriented and looking at his eyes, they weren't really focused. But, when I got ready to leave and told him it was time, he said OK and to be careful and just seemed more alert.

I don't know if he was awake most of the night again, or just what it was. Like I said, something is off and I can't pinpoint it. I didn't keep this to myself either, I told everyone who came in, but most just said to watch him.

An exception was made for the patient next door Sunday night. He hasn't been doing well and I noticed that someone from neurology had been in Saturday with an EEG machine. When I walked to Bill's room and his and this other patient's rooms are in the corner and are offset, the other patient's wife and 2 daughters, or a daughter an granddaughter were all there and had been all night. A couple of them were curled up in straight back chairs (oh how I remember trying to sleep in those) and there was a lot of activity in and out of the room. I have a feeling that they are going to take him off life support, if they haven't already. I did not see anyone from the palliative care team and usually Dr. Mullinax or someone from there will be in the unit when death is imminent. A sad situation and I feel so sorry for the family. So, I guess I'll see what happened after I left yesterday.

That's it for this update. Not much to tell, but the days again are running into each other. At least he was still able to maintain on the trach collar. Still coughing up a lot of gunk but getting it to the top of the trach and most times getting it coughed out himself. 

I let you know how today goes!