I've had a terrible time connected to the internet today, but finally got my tablet to connect. Bill's numbers a have been stable for most of the day. They have him on a medicine to keep his blood pressure up, but they haven't stopped his mididrine so his blood pressure has been all over the place. They have also restarted the same antibiotic and his hemoglobin was a little low so he's getting a unit of blood. 

He's not had any sedation since yesterday except for his xanax but he's slept all day.  He does respond to questions but then goes right back to sleep. 

We did get a little scare a while back. His monitor showed his heart rate dropped to 40 and his oxygen dropped along with his respiration. All of the alarms were going off. Two nurses and Dr Yaranov came running and one of the nurses touched his shoulder and asked if he was ok and he nodded and went back to sleep. So when the blood came his monitor leads were all changed. At least they have all of the monitors on at the nurses station. 

They may have to cath him. He had been good about walking himself up when he had to urinate but today he's waking after the fact. They were going to try a condom catheter but those don't work well with him, so they just have extra towels under him.

That's about it. I had planned on paying bills today but with the crazy internet that didn't happen. I've watched home improvement shows all day, mainly because that's the channel the TV was on. I don't know when I'm leaving today again. Traffic won't be as bad today and since he's sleeping still I may go ahead and go. I can tell I'm tired, mainly from being bored!

I'll update again tomorrow at some point. 

Another really bad day. I'm writing this from ICU. I was called just as I was getting off the interstate at the hospital. Bill had decompensated again and Xanax and dilaudid did not calm him down. So, the decision was made, by who I don't know, to move him to ICU. This did not upset me, I figured when he got as junky as he did Wednesday that this was where he needed to be.

The nurses had already packed up the room, except for my picture on the wall, and it took a couple of hours to get the ICU room cleaned, so he finally got moved about 9:30 this morning. Before he was even settled into the new bed, Mike from respiratory had brought in the bronch kit. I just grabbed my backpack and drink and said I would be sitting out in the waiting area just down the hall, not the ICU waiting room. The ICU doctor stopped me in the hall and asked some questions. He was a new one that we hadn't had before.

As I had been bringing the cart with all our stuff on it, I saw Kim from cardiac and she said she had heard he was coming back. I also saw Nick, one of the cardiac nurses who has been seeing Bill and he said he had texted Dr. Edwards. I saw Travis from PT and then got into the unit just as rounds started.

While sitting in the waiting area, I saw Dr. Oktied and Jim, one of the pastors, and then Jennifer, the nurse manager for ICU. Jim came and sat with me for awhile and we just chatted about different things. He's just a good ole boy. Jennifer came back by and asked if I had gotten any updates and I had not, so she checked and said that they were still in the middle of the bronch and she would send Austin, his nurse to get me when they were finished.

They did a deep lavage, which is filling his lungs with saline and flushing them out. The ICU doctor, and Dr. Sheikh said they got a bunch of thick secretions and a lot of stuff from the bottom of his left lung. He was still sedated and would probably sleep most of the day.

He has been awake off and on for a bit now and not comfortable at all. But, he got some more Xanax and has calmed down more. Austin suctioned him and still got some frothy blood, but it didn't look like too many secretions. He hasn't needed to be suctioned much at all. He did mouth "help me" but I don't think he knows where he is, even though I have told him. 

The plan for right now is to probably keep him on the vent through the week-end and then do a breathing trial with the trach collar to see how he does. I talked to Mark the case manager and he said we'll know more after the week-end as to what the plan will be. He said we probably won't be able to go to the critical care hospital in Jonesboro instead of Restorative Care because Dr. Edwards likes to keep his hands and eyes on his patients. So, I don't know if even moving to one of the other vent facilities in Memphis would be an option. Restorative Care managers may not have an option to move him unless it's a total to home or skilled nursing discharge like last time.

So, this is where we are right now. Part of me wants to stay here tonight, but there is no-one available right now to feed the cats, and I don't have anything with me. I really don't relish the idea of going home and taking care of things and driving back like I did the last time. He is stable now and where he needs to be, so I will probably go home, but may leave later than I usually do. I'm fine. I don't feel particularly stressed, just concerned. But like I said, I knew he needed to be in this unit 2 days ago. Now maybe he'll be able to gain some strength again. We'll just take it a day at a time.

Yesterday was not a good, not a good day at all. Bill had to be put back on the vent about 1:30 in the morning. They said all of a sudden he decompensated and his oxygen dropped to 79 They tried just going to CPAP but that didn't work and then tried SIMV mode and finally full vent on a pretty high rate of 18. His heart rate was back in the 120-130 range and he was overbreathing the vent for each breath, sometimes reach 40 breaths per minute. The nurse said they also gave him his night Xanax, Seroquel and Melatonin, but nothing worked to calm him before the crash. He was also running a low-grade temp of just over 100 and his blood pressure was low, after being perfect the day before and slightly high on the 2 days before that.

He kept telling me that he wanted that off and I told him that was how he was breathing. I asked his nurse if he could have his Xanax early and it was within the time frame allowed so she got it and he finally calmed down about 9. Stephanie had ordered a chest x-ray and she said it showed nothing different and his normal morning labs were OK, but she ordered some more tests and wanted a sputum sample. She was going to leave it up to Infectious Disease to decided on a urine sample or not, and the same with a stool sample if he had diarrhea, which he does not. She also said that his white count had gone from 10 to 16.

The doctor rounded about 11, but of course they never come in. And Phyllis just said that she would be back, but she never did come back. So, I don't know what was decided, but I had a bad feeling about it all day. Maybe just because Bill was having such a hard time. So I still don't know if a decision was made about moving to a different facility.

Dr. Muir was saddened to see him back on the vent. He had been in after I had left the past couple of days and said that he had looked so comfortable and good on the trach collar. He thinks that a small mucus plug probably got into the airway and stopped the airflow and in the process of getting his numbers back up, it dislodged again. This had happened in ICU before.

Ashley from Infectious Disease came in and confirmed the rise in his white count. She also said that since he had the fever, and I reminded her that his normal temp is 97.5, they did want a urine sample. She said the areas on his x-rays they were watching were still there, but she didn't see any significant changes one way or the other.

Respiratory tried to suction him for the sputum sample, and they got absolutely nothing, not even phlegm. We could hear the air moving through the suction tube and usually Bill would be fighting them and coughing for them then stop, but he wasn't even coughing. I don't know if they ever got it or not. He also had peed all afternoon.

He finally relaxed and went to sleep and his numbers just went back to normal, respirations were in the mid 20s and the vent is set on 18, oxygen 98-100, heart rate 77-86, perfect. He was sleeping when I left and Hanan was going to go ahead and give him his Xanax to keep him quiet.

One of the things that disturbed me through all of this is that they didn't call me. I realize that things were moving fast for a bit, but they could have had any nurse call, not just his nurse. So, I walked into it cold and thinking that it would be a good day and they could cap the trach again and get that going.

There was one bright spot in all of this. A couple, about my age, came into the room and asked if I was Beth. When I said I was, the man said that his cousin in Illinois had sent me "these flowers" and he handed me a beautiful bouquet of spring flowers. His wife was carrying a vase for them. They were from a classmate from high school. She is headed to Arkansas with her parents for a funeral today and she knew I had been having a bad day so she asked her cousin to do this. The flowers are lovely and did make a bad day better.

I also have been meaning to post a picture of Bill with his birthday kitty from his sister. Since I can't take Cat to visit (she doesn't travel well) this was the best we could do. Of course since he feels so bad, it just sits on his tray table.

Hopefully today will be a better day for both of us. I'll let you know!

Yesterday was aother bust. Bill was very junky and he tried every trick in the book, complete with pretending to be asleep, to get out of doing things. To his defense, he was very junky again and they were having to suction frequently and he was coughing up lots of stuff.

Stephanie wanted to try to speaking valve again and when we finally got him to agree, after she suctioned him, he had to pee. He he took so long Stephanie just said she would come back, which she did not do.

Lorie came in to do PT and he was adamant that he was not doing it, but I told him that if he didn't do at least half of the exercises, I was just going to put him in the nursing home and he could live there forever because I can't take care of him. He did half of what he usually does, but refused to get out of bed.

He did a little bit of speech therapy and swallowing and she covered his trach with her finger to get him to make some noise and he wouldn't talk.

We had a long talk before I left that if he ever wants to come home again, he has to start doing these things or he will go to a nursing home. He said he would do better today. Of course he probably won't remember the conversation so we'll have to have it again this morning.

I met with Phyllis the case manager and she said they are going to round today. She said that her managers are the ones pushing to have him transferred and there are only two facilities that will take vent patients and they are both in Memphis. She said the one in Jonesboro is the same type of facility as they are and they can't do lateral transfers. But, I wonder if it could be done by showing a hardship for the family with of the travel, which would be just about cut in half. She said depending on what the decision was today I would probably start getting some lessons on trach care and suctioning so if he goes home with the trach, I'll know what to do.

Dr. Mohratra, and I think I'lve spelled that wrong but he's the dr. I just about ran over one day because he was looking at his phone, came in and he's the one who will be rounding today. He was pleased that Bill was one trach collar and he said when it can stay capped for a week, they will work on reducing it and then removing it. When I told him I was under the impression it was to be permanent, he said no it wasn't. So, I'm not sure on that. He also wanted to know if he was walking and I told them they weren't even letting him stand yet, so maybe he'll tell therapy this passive stuff has got to stop and get more aggressive.

I felt much better after talking to him that I did after talking to Phyllis. Still, today is going to nervewracking until I know what they decide.

So, that's it. Another up and down day. Today I guess I put on my bad guy hat and make Bill do what he has got to do. If I can only get him to understand that if he wants to come home, which he does even if it's after skilled nursing for rehab, he's got to try. Yesterday he was even tapping on his tray table for me to hand him his urinal...which was next to where he was tapping. It's like he's decided that he's a total invalid now and can't do anything for himself. I did not get the urinal but told him he could reach it! I've also told him if he wants to use the bedside commond, he's got to do his therapy.

Let's hope today is better. I'm exhausted again and only got half of what I needed to do last night done. There needs to be more hours in a day!

Bill stayed on trach collar all night Monday night! I was pleasantly surprised to see that when I walked into his room. His nurse Kayla said the same thing. We both expected to see him back on CPAP from overnight.

When Stephanie came in she wanted to put the speaking valve on. She suctioned him and then he had to pee, and apparently he took too long for her to hang around. She just gave the respiratory techs the instructions to try it.

He still slept most of the morning. I don't know if it's too tiring for him, doing all of the breathing on his own now. Although he was doing it all on CPAP, the machine was keeping his airway open at all times. And now he's just breathing normally.

PT came about 1 and he did his exercises and then got in this chair. His numbers dropped some and they had to bump his oxygen up some to help him recover. I don't know what it was set on. I know on the machine it was 45%. For those that are interested 24% is room air, or normal air that we all breathe. I also know they are shooting for 40%, but the concentrator here at home makes 80%. So that's a little confusing.

After he was in his chair the valve was tried again and it was a huge failure. He went straight into a full panic attack. When his heart rate reached 120 we took it off and I just had to talk him down. It was too early for his Xanax so that was the only thing to do. I just got in his face and told him he was in panic mode and to slow his breathing down. He finally calmed down and went to sleep again. I don't know how he did it, but he slept for nearly 3 hours with his chin on his chest. 

When OT came in to see if he wanted to work, we decided to wait until today when the other therapist that he's been working with will be here. She's the really perky one that can get him to work when the other one can't. His nurse also came in and could tell that it was Xanax time. He kept trying to tell me something and I finally made him write it and he said "I am confused". I don't know if it was just because we woke him up so fast, or what it was. He said he didn't know where he was which is somewhat concerning. He got his Xanax and then got back into bed. Kayla saw what he had written so she may have given him a little longer assessment with his meds at 5 after I left. They didn't call so I guess everything was OK. He did seem more himself when I left. He had kept asking me where he was going when they put him in his chair so maybe he was confused thinking he was having some kind of procedure.

He may get a little excursion today. They are installing monitors of some kind in each room. They've done all of the hallway prep and I noticed that the lady across the hall was sitting down by the windows all morning in her chair. The head nurse and one of the workers kept looking into Bill's room during therapy so they may have been checking on when to do his. But he was having therapy then so they don't want to interfere with that. It will be interesting to see how they do it because technically he's not supposed to "mingle" with other people since he's still in isolation protocol. But, I got to thinking, the lady across the hall is also in isolation. He does have a different mask he can wear. I guess we'll find out today.

That's about it for the update. This is just a little aside. I've seen lots of things on all of my travels, from accidents to beautiful rainbows and sunrises. But the other day I saw something that I had only seen in pictures. I passed, and then was passed, and then I passed again a Maserati! I had only seen them in pictures. And you know what, I wasn't really impressed. To me it was just a car. I was more impressed with the Rolls Royce we see occasionally at Mayo, or the Lamborghini I saw once in Florida. I just thought it was interesting that it looked just like an ordinary car, nothing special. The interior might have been, but I don't think I would want to pay the price tag for just the name on the back!

Wonder what I'll see today?

Bill made it to trach collar about 11:15 yesterday morning! At first he did a lot of coughing, which is normal, and he coughed a bunch of nasty stuff up. This time it looked a little blood-tinged, which is new, but normal for his condition. And color changes in the secretions are normal also.

After he settled down after all the coughing and suctioning he went to sleep and, while I don't get respirations without the vent, his oxygen level was 100% and his heart rate was 85, nearly perfect. When Janet from infectious disease came him she said he looked very peaceful and that he was really resting...and then he woke up.

He kept telling me all day that he wanted me to take the collar off (the one that holds the trach in place) and I told him that was how he was breathing. He then informed me that he didn't have to have that to breathe before and he didn't know why he had to have it now! He just kept saying he was choking. When they changed it in the afternoon, I could understand why he would say that. The band is a spongy material and soft. I don't know the last time his had been changed but it was hard and had shrunk up. So, I imagine it had been choking him.

We're still playing with his Xanax some. Kayla gave him his morning dose, she could tell just looking at him in the morning that he was agitated. She thought the afternoon dose should be held, but I told her that he gets agitated when I leave, so she gave him that one. He had also been through the trach care and a bowel movement so was a little agitated from that. But, she agreed that on top of the Seroquel, the Xanax just might be too much. So, we'll see how he is this morning.

He didn't have any therapy at all yesterday. The therapists didn't even make it to our hallway until 4 pm. The nurse said the therapy staff had been cut in half and could only do what they could. I let it go since I figured trach collar was enough to try in one day. But today, he's going to get in his chair as early as I can get him there. 

He wants so badly to be able to use the bedside commode, or go into the bathroom to do his business. He told me he had to poop and told him to go ahead and he said he was holding it until he could go into the bathroom! Hopefully he's not still holding it! Of course all the coughing he was doing, bringing up the secretions, was working against that. I told him he just had to work hard with therapy so that they would let him stand up and then he could use the bedside commode when he was stable enough to stand and pivot to sit on it.

That's how his day went. Let's hope the night was the same, although it wouldn't surprise me, or upset me, if he was put back on CPAP to sleep. It would depend on if his sats stayed up and since they stayed up during his nap yesterday, I have a feeling they would at night too. So we'll see when I get there.

I'm hurting all over this morning. We had another weather front come through yesterday, and I can tell I didn't relax in the night again, although I slept well. But, every part of my body hurts this morning and the Aleve hasn't kicked in yet. Hope it hurries up!

I had a reader tell me yesterday that I have helped her so much in dealing with her husband's transplant and all of his complications. He finally was moved to rehab yesterday after 104 days in the hospital. And that's part of why I do this. If it helps one person know that someone else has "been there, done that" and made it through then it's worth it. Katie and Pete, I wish all the best for continued recovery and a great new life after transplant!

Not only was yesterday Bill's 77th birthday, it was day 100 in the hospital. It was also a cold and rainy day, a good day to just sleep...and that's what Bill did...almost all day. After talking to his nurse, we think it's the Xanax. Stephanie said that when she changed it from when needed to scheduled, she also put a note for the nurses that it he wasn't agitated and his numbers were good they could hold it so that he wouldn't sleep all the time. I think the night dose, on top of the Seroquel, was what did it. So, Nick was going to hold his 5 pm dose since he was sleeping. I think he needs the morning dose and the 5 pm dose because that's right after I leave and he usually gets agitated then. But, he doesn't need the 9 pm dose on top of the Seroquel. We worked to hard to get that given at the right time. So hopefully today he'll be awake.

The plan is still to switch to trach collar, but his numbers were all over the place after Stephanie left yesterday. At one point he was breathing so hard and fast that his head was raising off the pillow. It was showing 41 breaths, his oxygen was in the low to mid 90s and his heart rate was about 115. But, when I would wake him and tell him to relax, he would calm down until he went back to sleep. I don't know if he was dreaming or what. And then, in the mid afternoon, everything changed again. His respirations dropped into the 20s, his oxygen went up to 97 and his heart rate was 85. So, depending on how his night went and what his morning looks like, he may have to stay on CPAP another day. I wouldn't be surprised.

When I got there Albert told me it was bath day and he wanted to do it while I was there. Bill will refuse things when I'm not and the night PCAs apparently have given up giving him a bath. Of course, I can understand that. Why wake someone up in the night to give them a bath. I can understand also that they bathe the ones that are sedated in the night because that frees the day staff to tend to awake and more "demanding" patients in the day. But, anyway, I told him whenever he wanted to do it. And it turned out we did it right then. And by we I mean me and Albert. Bill had had a bowel movement and had tried to clean himself with his padding and...well you can guess what happened. So, Albert tossed me a pair of gloves and off we went. And, during the process, somehow, the trach cannula came completely out! I put it in a little way, but they haven't shown me exactly how to do it, so Albert held it steady while I ran and got help. We ended up with respiratory, a head nurse, and 2 other nurses! But, that was my fault. I told Pam, the head nurse who was the first one I saw that his trach had come out and they thought it was the entire trach, which would have been quite serious. It turned out that when the cannula had been changed last, it was not locked into place completely so that every time Bill moved his head, it came out a little further.

Bill did tell me that his belly hurt and I did tell his nurse Nick, but Bill couldn't define just where or how it hurt. He did have a lot of gas. Maybe whatever was going on there also contributed to him sleeping all day. The little bit he was awake he kept grabbing his belly and telling me he had to poop. His only option is to just go. They won't bring his bedside commode since he's now probably too weak to stand, going to work on that today, hopefully. And he refuses to use a bedpan, which does hurt if you don't have any "padding" and he doesn't. And I thought that the belly pain might be just because he's holding it as long as he can, which was doing more harm than good.

I checked with Nick, the nurse, and he said he could have either a stool softener or a laxative, both were ordered as needed. We decided to go ahead and do the laxative to really get him cleaned out. It worked pretty fast and must have been a little painful, because Bill grimaced and grabbed his belly. And after he went, Albert said that he could see some blood. It was not old blood, but bright red and not a lot, but it was there. I couldn't look because I was on the other side of the bed holding his vent tubing. So, something to report to the doctors today. Since he's not being seen by gastro I guess the person to really tell would be Dr. Muir the hematologist. He's the one who wanted the iron checked the other day and it was fine, so I'm hoping he comes rather early today.

Bill roused up enough to open his birthday cards and his gift from his sister. She sent him a stuffed cat that looks kind of like Cat, which is his favorite of our 2 cats. I took a couple of pictures of him with it. And then we sat it on his tray table so that it's looking at him, like a real cat does, just staring at him. I think he's going to name it Shirley after his sister!

So, that's our day. I had a little stomach upset yesterday. I felt fine until after I ate breakfast and it just didn't settle well. I think part of it was also anticipation of the day. But, I'm better now, at least for now. Today will not only be trach collar day, but talking to therapy today and probably the case manager. I still want to know why I was not included in the decision making at the interdisciplinary meeting, or at least had a one on one with either Phyllis the case manager or Pam the social worker. So, it may be another nerve racking day. I didn't even knit or read or crochet yesterday. 

Hopefully we'll progress through everything today and it will all go smoothly. And of course, I'll let you know!

Yesterday was almost anticlimactic! You know, the hour plus drive I have to get to the hospital is a good time to think, to rehearse in my head and sometimes out loud what I want to say and to pray. I think I did all of those yesterday. And when the time came, nary a harsh word was spoken!

Bill was awake watching TV when I got there. He said he only had a so-so night but he looked rested. When his nurse Nick came to do meds, I asked him to go ahead and get him a Xanax and he did that immediately with no questions asked.

When I saw Stephanie at the door getting her gown on, I took a deep breath and just asked God to get me through it with the right words and attitude. She walked to the side of his bed, looked at the vent numbers and smiled and then told Bill that she was proud of him for doing exactly what she had asked him to do, slow his breathing down. Before I could say anything she said that her plan was to put him on trach collar Monday and get rid of the vent. I told her that if I was there I could talk him through it and if he needed to go back to CPAP at night, that was fine with me. She said she didn't think he would have to. I then asked if the Xanax could be changed to scheduled from as needed so that he would have it in his system and stay calmer all the time. She looked at her notes and said that could be done.  She said she disagreed with Dr. Henderson about moving to another facility, mainly because there are very few in this area. I told her I had seen one in Jonesboro, but couldn't remember the name of it. But she said, he wouldn't need it, he would walk out of there! I don't think that will happen unless therapy gets really aggressive, but she said she wanted to see him walk like she did the first time she saw him in the office! I told her I wasn't opposed to skilled nursing like last time, but she was very positive that he wouldn't need it. Unfortunately, she hasn't watched the therapy he's been getting. So, a compromise was reached without me opening my mouth! Thank you Lord!

I can't do anything about more aggressive therapy until tomorrow at the earliest since they don't do therapy on week-ends. But, I did insist that he get into his chair. He wasn't too happy about it, but was fine once he was there. I even asked if he wanted to go back to bed when I left and he said no, he was fine where he was and wanted to keep sitting up. Now, that's my Bill, who has never liked laying in bed (maybe because we don't have a TV in the bedroom, and won't).

Cindy from cardiology asked if anything had been said yet about a home vent, and nothing has, but I have researched it. There is a device out that can be non-invasive and works more like a CPAP or BIPAP machine, or it can be invasive (connected to a trach) and works more like a vent in SIMV mode. Our oxygen supplier had mentioned it a while back and I wouldn't be surprised if we needed to go that route. Just another piece of equipment for our inventory.

He was fine that I had to leave early but Ryan called and said that Sweetie (that's what they call the guy) had just called and wasn't going to be able to make it after all. Now, I had a dilemma. I decided that since I was tired from not sleeping much the night before, I was going to come home anyway. I could use a few extra hours to myself. I will just tell Bill that they called when I was on my way home and told me. So, I got a little laundry done, I should have stopped at Walmart and got a few things, but I didn't want to be in the crowds. I got a tax return fixed and sent and started working on the last one I have to do so far. I didn't even turn the TV on. I had planned to listen to the Cubs game since I couldn't watch it here until 11 pm and that's way to late for me. Just a nice quiet afternoon and evening.

I still didn't sleep real well and woke up with leg cramps again in my right calf. Even though I take Potassium, it's running low still. Dr. Morrow, the cardiologist, thinks it's probably from the diuretic in my blood pressure pill. I still don't have the results of the labs she did Wednesday, but I also haven't looked on the websit to see if they are posted. So, I'll pick up a banana at the hospital when I get there and no, that won't be all I have for breakfast!

Today is Bill's 77th birthday! Another birthday that many people didn't think he would see. Of course it has to be very quiet because he can't have any cake or ice cream. But, he's going to get some phone calls, I'll just hold the phone to his ear. Everyone who will call knows he can only listen. I'll watch his lips to see what he's trying to say, because he will try to talk to them and relay messages. We'll have a bigger celebration when he's off the vent and can talk.

So, that's the day one of my new strategy went. The rest has to wait until at least tomorrow since none of management works on week-ends, along with therapy. So, it ain't over till it's over, or the fat lady sings, and I've been warming up my vocal chords! I'll keep you posted!

This is going to be another tough one to post. What started out as a great day turned into Beth's Very Bad Day. But, there are always solutions to problems and I'm finding out I'm getting to be a pretty good problem solver.

Bill was awake yesterday when I got there and "chatty". He said he slept good and all his numbers were good. But, he said he was choking and couldn't breathe. He was coughing some stuff into his tubing, which is good. I told him he was breathing fine and getting plenty of air and he just needed to calm himself down a little. He did and I made sure that his Xanax was added to his morning meds.

He didn't really want to work with speech yesterday and didn't want any ice chips. He acted like his throat hurt when he swallowed, and it may have from all the coughing he was doing. The cannula had shifted some too, which may have been hurting. The respiratory tech said that he's lost some muscle and fat in that area and that lets the cannula move more, even thought it's not supposed to move at all. I think that because it's the longer one, when it moves it irritates his throat.

He did work really hard with OT, did his arm exercises and washed his face and combed his hair and then took pegs off and put them back on a board alternating hands. He did that really well.

Occasionally he would still say he couldn't breathe, but again, his numbers were fine. They were only getting a little stuff out when they would suction and the secretions aren't really thick. He is still on antibiotics until Monday, I think.

Dr. Muir came in and we chatted for a bit and a little later his nurse said she needed to draw some blood because they wanted to check his iron, so his anemia must be trying kick in again.

Just after lunch a different nurse practitioner came in for the lung group and she said she was leaving him just like he was, on CPAP. I just thought they wanted to give him 48 hours on it instead of 24. And then Dr. Henderson came in. He's one of the lung physicians. This is where the day tanked and I'm just going to type my notes verbatim instead of trying to re-word them. You'll understand how I felt anyway. So here goes:

"Dr. Henderson came by and was not encouraging. He said they had a multi-disciplinary meeting yesterday and they think it's time he's moved to a facility for more long-term vent weaning. Doesn't mean they're giving up-according to him. I got the feeling from him that they are. My opinion-they are too conservative. He's always going to have secretions. He is always going to have congestion. Waiting to talk to Phyllis (nurse case manager) about options-not looking forward to that. I don't think they're even going to try trach collar now. I just want to throw up and cry. And I still have to explain it to Bill. Need to do lots of research and get lots of advice. Bill said he feels good and he's going home. Had a little cry whin I told him what dr. said so now my mind is starting to work again...just thought DR. Henderson has seen him a total of 3 times, 1st to replace trach, then Weds. on rounds and then today. I wish we could se a "1st string" dr like with the other group. We saw Dr. Fox and Dr. Munday but not Dr. Williams. I'm surprised we see Dr. Edwards. Wonder who is on for the week-end".

I'll give more thoughts on this in a minute. I wanted Bill to get in his chair but the nurses wanted to wait until PT came to see him. He didn't want to work with her, but he did the leg exercises and then they put him in his chair. He wanted back to bed after 10 minutes, but I made him stay the entire 2 hours. He started to get a little agitated at one time and his heart rate went up along with his respirations which go up to 40. But I just looked him straight in the eye and told him he was working himself into panic mode and to stop it and calm down. His heart rate started going down and his respirations dropped to 30 immediately. None of the alarms sounded on the vent so he was good. He made his 2 hours in the chair and as soon as he was back in bed he was his happy self and it was time for me to leave and was fine.

I made some more notes on my thoughts and after being upset and feeling blindsided, I got angry. We've been compliant with everything so far, even not giving in to a sip of water or coffee. We've followed the rules So, starting today I'm making some demands. I checked with nurse daughter to see if I'm within our rights and I am. Bill also signed that advanced directive which will help (need to get my copy and put in my backpack).

Since I know Bill better than anyone else there, and since he has done so well on CPAP, I'm going to tell whichever pulmonary person we see, that as long as I am there, I want him on trach collar. This of course is assuming that he is not having any problems with his numbers and I've watched them enough to know when he is having problems or not. And if I'm wrong, then at least we tried. I don't care if they put him back on CPAP at night when he's ready for bed, or if he's having problems, but we're going to do it they way they do it in ICU, just do it, but have someone there to talk him through, which is why I only want it done to start with when I'm there. And if he has problems, then I'll know he's not ready. I know that this is a process, they've told me that enough, but as Dr. Threlkeld said, sometimes you have to throw protocol away and treat the patient not the process. So, starting today I'm going to insist on that.

I'm also going to insist he get into his chair every morning, even if he doesn't want to, and they have to be more aggressive with physical therapy, not just basic leg exercises. He needs to stand and the cardiac doctors want him on his feet to get those lungs stretched.

I also want his Xanas order changed from PRN (as needed) to scheduled, at least his morning dose. But, I might do both as the nurses aren't giving it to him after I leave if he gets agitated. They ask him if he wants it and he says no, so just give it to him and don't give him the choice. This may sound cruel to do to him, but he doesn't know what meds he takes anyway.

Now, more verbatim notes: "He has declined since coming to this unit. Was on trach collar when he arrived-1 panic attack 1st night and on vent, when he hadn't been on vent in ICU from 1-7 through 1-13, trach collar only. (The 13th is the day he was transferred). Was standing with a walker and marching in place. Standing, pivoting, shuffling with a walker to his chair. He did not need OT. Speech therapist was afraid of the teepee trach collar so it wasn't going well".

"Maybe since he's declined so much here it would be better to move to another facility-as long as they are aggressive".

When I was talking to Bill's daughter Mary about this (she's the nurse) the first question she asked, that I hadn't even thought of was why a family member of the patient was not at the multi-disciplinary meeting? This meeting is where all of the different disciplines, medical, therapy, social worker, case manager get together to discuss progress/nonprogress of the patient and give target dates for meeting certain goals. So, why wasn't I told about this meeting happening, and if it was when I was at the doctor the other day, why wasn't it re-scheduled for when I could be there?

To show you just how much he has declined since being moved, I made a little collage of pictures. The first one with him holding up his arm is the day he was moved, Jan. 13. He is on trach collar. The one on the left in 2 days later, on the 15th. He's sitting in his chair but he is on the vent. The middle one is Jan.29 and the one on the right is Feb. 15, one week ago.

You can see such a difference in him, it's sad. And makes me angry at the same time.

Now you know why I said it was Beth's very bad day, and there may be another one today. I also have to leave early to meet a repairman. I don't remember if I said anything about a leak in our storage area and the ceiling falling in, but I'm meeting with someone this afternoon to get esitmates for repairs. 

But, on a good note, baseball starts today! And just to get to my brother a little...Go Cubs!

The vent was changed to CPAP mode yesterday and he did great! His numbers stayed up, his heart rate stayed down and his respirations stayed what is probably normal for him, upper 20s to low 30s. Stephanie would like them lower still, but I think she has accepted that this is as low as they are going to go. Hopefully today he'll get to try trach collar, but she may keep him on CPAP for another day just to make sure. She told him she was really proud of how hard he was working.

The xanax has finally gotten into his system enough now that he doesn't immediately fall asleep. He stayed up all day yesterday, although I think he dozed off while he was sitting in his chair. He didn't want to get up but I told him he had to because I was not putting a TV in the bedroom! We are one of the few households that doesn't have a TV in the bedroom and I'm just fine with it! We did have one in Florida in the condo but we rarely turned it on, mainly if we were watching something and it was time to clean his driveline when he had the LVAD. 

I also told him that if he got into his chair he wouldn't have to get the "shaky bed" treatment. He hates the bed percussions and Diane told me she doesn't have to do it if he's moving around. So, that helped in getting him up. I'm going to try to get them to do it earlier today, unless he goes to trach collar early and then we'll let him get used to that first.

That's really all that happened yesterday...except for driving in the snow/rain/sleet. It started as a very fine snow here, so fine you could feel it and see it on the windshield, but you couldn't see the flakes. Then, as I went down the road, it changed to just rain, then heavy rain, then heavy rain and sleet and as I rounded a curve, some white stuff flew up from the front of my car. So, there had been snow mixed in that had started to accumulate on the front bumper. And the parking lot was slick so I was glad I had my cane with me. I was going to leave it in the car as my hip has been feeling a lot better lately, but since my foot slid when I put it on the ground outside the car I decided I had better take it. All of the stuff was gone, although I watched it snow for a couple of hours and now it's just cold!

I must not have rested well last night. My entire body hurts this morning, not just my hip but everywhere. So I must not have relaxed in the night. Hopefully coffee will help.

That's all for this one. We'll see how the day goes!

There's not a lot to tell about today since it was a short one for me as far as the hospital goes. Bill did just fine without me. In fact, he was probably better before I got there than after! The vent was turned down to 4 with the order given to respiratory to only call if his sats dropped into the low 80s and his respirations went into the 40s. Otherwise, they were just to monitor. And, he was doing fine. His heart rate was up some, but he hadn't gotten any xanax this morning. After I got there, he got a little agitated after doing therapy, which he didn't want to do, so he got some then and by the time I left it was back under 100. The one concerning thing was a blood pressure spike about 3 this afternoon, extremely high, even for me 176/something. He did say during therapy that he was really hot and he was flushed, so something was going on for a bit. Then he cooled down and wanted his blanket and sheet back on.

I was going to stay later this evening, but left at my usual time. I'm really tired and he was OK with me leaving. I didn't get to the hospital until 1:30. My doctor is very good, but she's really slow and always runs behind. My appointment was at 11:15 and I was finally put in a room at 12:45. I knew the appointment wouldn't take long since I'm not having any.problems, but waiting and wondering how Bill was doing was stressful.

I got a good report. She increased one of my blood pressure meds since my bp keeps creeping up. But, even though I had gained 2 pounds in 6 months, she wasn't concerned about it. She was more concerned about the results of my labs from last month at the local dr. I knew that my potassium was low, but only by a hair. What Dr. Morrow was concerned about was my sodium. It is also low and she said that sodium is one of the things that can be dangerous if it is low. My primary care dr. didn't say anything about that, just also wanted my magnesium checked, which was OK. So, we did more labs today since it had been a little over a month since I had them drawn here. I imagine I will get a phone call in a day or 2 with the results. Or, I can check the app tomorrow to see if they are in there.

So, I'm home, I'm tired and nothing else is going to get done tonight. The cats have been fed, the trash ready to go out in the morning. I do need to do the litter boxes, but I'll do that in the morning. For now, I'm shutting down and going to bed. Goodnight everybody!

Not much happened yesterday. Bill was not awake when I got there, but he woke up shortly after during the little thunderstorm. It did get a little loud!

Stephanie contemplated just taking Bill completely off the vent and going to trach collar (that's how they do it in ICU, referring to it as a breathing trial). I told her if she was going to do that, yesterday would be the day to do it since I won't be there this morning. But, she said she couldn't do it, she just wanted to. She did turn him from 15 breaths from the machine to 10, which means that in a minutes time, if he doesn't breathe the machine will breathe up to 15 times per minute. He did fine that way, although at times he said he couldn't breathe, but all his numbers would be nearly perfect.

He did have speech therapy working with ice chips again. She said his swallow is still pretty weak but they can really start working when he's off the vent.

I have an appointment with my cardiologist this morning for my 6 month check-up. I decided not to go to the hospital first but to stay home and get my oil changed and do a little business. Stephanie knows I won't be there and I told her I would be available by phone until 11. I left Bill a note on his tablet on the tray reminding him and the respiratory tech will be the same as yesterday so she knows. His nurse didn't know who he would have today, but she said she would put a note in his chart for him to get his Xanax with his morning meds instead of asking if he wanted it. He did stay nice and calm yesterday, and awake all day. So he must have slept well.

I did notice that his respirations picked up when anyone came in the room to do anything, but I think that would be normal for any of us, wondering who this person was and what they were going to do. I guess I can test that theory at my appointment.

Dr. Morrow is notoriously behind all the time, but I'm hoping since my appointment is before lunch, she'll be a little faster. I'm also envisioning that I will just smack her if she tells me to reduce stress again. That would reduce some! Just kidding, but why do doctors, when they know you are in a stressful situation you really have no control over, tell you that you have to reduce stress? I told my regular years ago when he suggested that I reduce stress that I could quit my job, divorce Bill, disown the kids, and move to a cave...there stress gone! He got the point and never said another word about it. Yes, I know stress kills, but sometimes there is no way to reduce it other than try to get a little breathing room. I could go on about some of the suggestions caregivers are given sound good but are impractical, but that would be another entire post. So, we'll just leave it this way.

Anyway, hopefully Bill has a good morning and doesn't get too agitated while I'm not there so that he doesn't get the vent turned down to 4 as planned. I'll let you know how things go!

Yesterday was a good day, compared to the last few. Bill was awake when I got there and all of his numbers look good. He was changed over to SIMV mode in the morning, and as I suspected, when Walter looked at Bill's numbers to make the switch and decided he didn't like them, was right after he had been cleaned up from using the bathroom. He was actually more interested in Daytona than coming  back in and checking on him. I only know this because the volume on his phone was pretty loud. And, I really wanted to snap at Stephanie when she came in. All she said was that he needed to not get so anxious and to slow his breathing down because she was trying to get him off the machine. How many times do medical people need to be told that someone has had a stroke in the past and doesn't remember things. He's also been in the hospital 3 months and is rather overwhelmed. Even his nurses are asking him if he "needs" a Xanax. I just watch his numbers and when they start to go up, or he seems a little aggravated, I tell them to give him one. 

He took a little nap, but didn't sleep long after getting one at lunchtime yesterday. He worked with both PT and OT in the afternoon. He didn't want to do his leg exercises until I told him he couldn't come home until he got stronger. And his legs have now gotten very weak. But, when OT came in, he did all of his arm exercises without any help and then did the clothespins with each hand. Of course when he uses his left hand, which is his weaker one and everything is in/on his left hand/arm, it's harder to use, he tries to cheat. But, she didn't let him.

He did have a tummy problem yesterday. He told me it hurt and he had several bowel movements. Usually he's a once a day guy, but there were several, and they were all very liquid. They are usually soft from the liquid feed, but these were not just soft. His food hasn't changed and he's been on the antibiotic for long enough that it shouldn't have done it. That, by the way, is scheduled to end tomorrow. So we'll see how it goes then. 

His secretions are still thin now instead of the thick sticky ones so the antibiotic has done it's job. And, Dr. Muir told me that his blood count was 26 yesterday morning, so he did get a pretty big boost from the unit he got. He'll continue to monitor his numbers and give him more if necessary.

I came home and bought a few groceries and by the time I got them put away, fed the cats and fed me, I was exhausted. It was a case of I should be doing...instead I was in bed by 8. I can tell the weather is going crazy again, raining when it wasn't supposed to be, and I'm working on a 3 day headache. It's all sinus related because my nose is running like crazy, and the headache is not extreme. But, it's one that nothing is touching.

Tomorrow I have an appointment with my cardiologist. I'm not going to the hospital first, I'm getting the oil changed in my car first thing. If I can get out of town by 9:30, I'll be fine. And then I'll go to the hospital. I haven't told Bill yet and I'll have to talk to the staff to make sure he gets his Xanax with his morning meds. And, I'll miss his doctors, especially Stephanie. But, I need to do it this way instead of leaving early to get the oil done. My reminder light came on last week and I have been keeping an eye on the pressure to make sure I'm not pushing it too close. I just hope Dr. Morrow doesn't mention reducing stress as she usually does. I don't know if I would smack her or just get up and leave. Why do they do that, when they know you're dealing with a stressful situation? Do they think we don't know we're stressed? I do what I can, but other than divorcing Bill, disowning the kids, and moving to a cave, there isn't much else that can be done! OK rant over.

On a happier note to end this, my daughter's oldest daughter, Brianna, got engaged Sunday morning after church! Although they knew they were getting married, she didn't know that he had gotten "the ring" and was pretty surprised. So, that puts a bright spot in all of this that we're going through.

All for today. We'll see how it goes, maybe back to CPAP!

To use the title of a hymn, and it could even be considered blasphemous "there's power in the blood"! The unit of blood worked its magic and all of his numbers have stabilized. He was awake and "growling" when I got here. The trach was leaking some so he could make some noise and it was just a growl.

Stephanie said the EKG showed sinus tachycardia but no afib which is what she was afraid of. The lab work showed some elevated levels but she's going to leave any treatment for that up to infectious disease since he's already on antibiotics. So , he's going back to the SIMV mode today!

His nurse just came in with morning meds and she said he slept well all night. So the timing of his sleep meds must have been right.

I was able to find what I was looking for on Supraventricular tachycardia and sinus tachycardia is a form of that. I also looked at the signs of anemia and he had several of those. Usually we only see Dr. Muir once a week so to see him 3 days in a row, he must have suspected this.

So a much better start to the day. Walt is not going to switch his vent quite yet. He sometimes starts breathing harder. We're going to hold the xanax since he's pretty calm right now.

Final update for today. Dr. Muir the hematologist came in and said that Bill's hematocrit was barely under the limit for giving blood, so he ordered a unit. That explains his comment about his numbers are acceptable. He said the cut-off for giving blood is 24 (it was 25 in ICU) and his was 23.8. So, just barely under, but under nonetheless. He thought that treating the anemia would make a difference.

I never did get any results on the EKG or the lab tests. I'll ask Stephanie in the morning.

Bill did perk up some this afternoon and we talked a little. He wanted to know how long he had been in the hospital and couldn't believe it was 3 months. He wanted then to know how long he would be there and all I could tell him was we didn't know.

He was trying to nap again when I left but I could tell he wasn't really resting and although his numbers were staying in the acceptable range, I don't think it would take much to send them higher. I told Laura to use her judgment as to giving him more Xanax. We decided that unless he needed it sooner, she would give him some when she gave the last meds for her shift. He would then get his Seroquel at 9, so maybe he would sleep and rest through the night. At this point, I don't care if he sleeps most of the day again tomorrow.

I had a post show up on Facebook about a condition (and like an idiot I can't remember the name of it or find the post again) where your heart just starts beating too fast. And one of the treatments that is non-invasive, is Xanax! An episode usually lasts a few hours to a few days (Bill's episodes of this rapid heart beat and respiration usually last about 24 hours). So, I'm going to be doing some research on this and see if I can find the article again. Wish me luck! All I can remember is that it came from the Mayo Connect Group that I'm a member of, but I didn't find it there. So, I'll keep looking.

I'm still in no mood to talk to people. I have been texting some, but I just need to be quiet and still. I love all of you and know that you only want to help. Giving me space is the best way you can do that. I'll let you know when I'm ready. 

I hadn't planned on updating during the day, but it's not a good day.  After his numbers being good yesterday he was back on full vent when I got here this morning. They said he got agitated about 6:30 so they gave him his xanax Ann's that didn't help. His respiration went up again along with his heart rate while his oxygen dropped. Walter, one of my favorite respiratory techs, went ahead and put him back on full vent but that also didn't help.

Stephanie ordered an EKG and some labs to check his calcium levels and also gave him some dilaudid to further calm him. That worked for a while, but it also really disorients him and makes it difficult for him to do even simple things like pick up his urinal. It has worn off more now and he's asking questions about eating and what they are going to do next.

They haven't had to suction much and he's not coughing much. I don't know if this is a good or bad thing. They haven't given me any results from the tests yet. Amanda from cardiology wasn't aware of the EKG so she was going to look at that and said that Dr. Edwards was on call this weekend Ann's should probably be in later. But as you know he likes to round late so I will probably be gone if he comes.

They keep saying he has no fever because his temps have been in the 98.4 range. But normal for him is 97.5 and I have told them that numerous times. He's still getting his antibiotics and since one is very high powered he should have responded to it by now according to infectious disease.

I did tell Laura about the lethargy yesterday and that he eventually really responded. So she said we'll just watch and see if we think something else is happening like small strokes.

I was looking at pictures I had taken of him and the deterioration from the day he was transferred from ICU to today is very apparent and, to me, very sad. I did make myself ask the big question about giving up and he still does not want to stop anything. But I can also tell he's getting very tired of it all.

That's the latest. I'm managing to hold it together...barely. And if you read this and think about calling, please don't. I'm not ready to talk.

As good as Thursday was, yesterday was a bust. His numbers were all good, stayed in the 20s most of the time and his oxygen stayed in the high 90s with his heart rate 80s to 90s. He was awake when I got there and not agitated, so I was surprised that Stephanie said she didn't want to make any changes to the vent and that they would get another chest xray Monday. I don't know if something went on in the night that was reported by the respiratory tech or what. Cam, the cardiology nurse was puzzled also.

When he got his Xanax about 8, he went back to sleep and slept all day and was very lethargic when he was awake. Occupational therapy came in (she did come in after I left early one afternoon) and he wouldn't even try to move his arms on his own. So, she was just doing more passive range of motion exercises. He also had trouble trying to do the clothes pins.

I also noticed that when he needed to roll in bed, he wasn't reaching for the bed rails as before. And, he would just tap on his bed tray to get my attention and then point to his urinal, which was sitting right next to where he was tapping! He could put the urinal back on the tray when he was finished, but wouldn't reach for it. He was also very passive during his bath, which is a good thing, but he also slept through a lot of it.

Emily, McKenna and her boyfriend Logan stopped by late in the afternoon. Emily had a drs. appointment in Memphis so came by after. Bill was awake, mostly by then, and by the time they left about 4:30 he was fully awake. He also started interacting with McKenna a little. When it came time for me to leave, we went through the usual routine of leaving and he was almost back to normal. So, I don't know what was going on. I talked to his nurse and we decided to hold the afternoon dose of Xanax, and she told me that he hadn't had any Thursday after the dose at 4. But he did get his Seroquel, so maybe it was all just too much. We'll see this morning.

The hematologist, who is Dr. Muir, is pleased with his blood numbers, doesn't see anything really wrong. He's also a nice chatty man. Dr. Oktied was happy with his blood sugar numbers. We ran into each other at the elevators so I got a quick update.

That's about it, a very quiet Valentine's Day. I got him a little balloon and a stuffed kitty from the gift shop, but he wasn't too impressed. Oh well, I tried. I crocheted all day while he slept, and I can tell it in my hands this morning.

It's cold this morning again so I may wait a little longer to leave, not that it will be any warmer, but since it's Saturday, parking shouldn't be much of an issue. Stay warm, stay cool, stay safe wherever you may be.

Bill's numbers were a little wacky again this morning, but he hadn't had his xanax and I could tell he was a little agitated. So I talked to his nurse and he got it about 8:30. Stephanie was skeptical about switching him from full vent to the SIMV assist mode, but she finally decided that if he could keep his respirations in the 30s she would take it, even though she didn't like it...and he did well!

He slept for a while after the xanax was given, but he got into his chair about 11:30. He really didn't want to do it, but Chris and I told him that he had to get out of bed. And he stayed up until 4:30. He did take a little nap, but he watched TV all afternoon. I showed him some pictures of the grandkids holding puppies and McKenna at her Valentine Court presentation.

The antibiotics are working. Ashley didn't say how long they would give them. Since this strain only responds to 4 antibiotics, they don't want it to become resistant to any of them. So, we'll see. I imagine it will be a minimum of 7 days.

That's about it, no speech therapy or OT. But, at least he got out of bed today. Tomorrow marks 3 months in the hospital and he wants to come home so much. He does know I can't take care of him right now, but he still tells me he wants to come home with me. One of these days, one of these days!

So, even though this is short, it was all in all a good day. And now, it's just about time for me to go to bed. Goodnight!

Today was a much, much better day! Bill was awake when I got there and his nurse said he had a good night.The only thing I know that happened was that he refused to let them give him a bath. His numbers were all good, back to where they should be. His respirations were still a little high in the low 30s, but heart rate was 107 and oxygen was 96.

He got a good bath from Albert and a shave which made him feel much better. He also did argue about the bath and Albert gave Caleb a run for his money in bathing and shaving. He's been the PCA all week and he's been wonderful with him. He said that today is his Friday so we won't have him for a couple of days, and then they may move him to the other hall.

When he was suctioned this morning, she said he still had a bunch of secretions and they are gray. I watch the collection container when they flush the suction tube to see what it looks like. But, she only had to go down once. When Stephanie came in she lowered the pressure on the vent, but kept the rate the same. She said that tomorrow, since he will have had 2 days of antibiotics and xanax, she may put the vent back to SIMV mode to see how he does. She had also run some blood gases yesterday after I left and they were perfect.

Janet from infectious disease said he still sounded junky to her, but overall thought he looked better. 

His nurse Kayla said they had to increase his insulin again. When they checked his blood sugar at one point yesterday evening, and since Kayla was there it was probably at 4, it was over 400! So, they called Dr. Oktied and he increased it again. Between the Prednisone and the tube feeds, they are really causing havoc with his blood sugar.

He stayed nice and calm all day, watching TV and napping. He hadn't had any therapy before I left and I told him if they came after I was gone, not to argue with them, to get in the chair if they wanted him to, or do his leg exercises, or move the rings and clothes pins. His numbers when I left were perfect. They have his respirations set at 25 and he was at 27, oxygen was 99 and heart rate was 85. 

I left somewhat early again and needed a motor boat just to get to my car in the parking lot! It rained hard, with the fog, all the way home. Mary Rose called while I was on the road and after I said hello, she just said Oh my, she could hear the rain. But since my car is hands free, we could talk for a bit. After I got home, since I was partially wet, I took the trash to the curb and the water was ankle deep in the backyard! Of course I didn't know that until I stepped in it. So, jeans hanging over the bathtub dripping and tennis shoes in the dryer. Hopefully they will be dry by morning!

I went to bed at 7 last night and slept until 4. I'm going to try to stay up a little later tonight as Blytheville is going to be on the ID channel tonight for an unusual murder. 

So, that's it. I've done a couple of tax returns and cooked myself some dinner and now I'm ready to curl up on the couch for a bit with the cats. Hopefully tomorrow will be just as good as today!

It was a broken night to say the least. Bill slept most of the night and gave his nurse a hard time at one point when she came in and had to wake him. I finally got up about 4. The couch was not comfortable to sleep on and the room was freezing cold. All of that aggravated my hip and toe and I was in pain. So, took a pain pill first thing in the morning. Bill was also awake and winked at me! He also tracked me across the room as I was going to the bathroom. I think now that it confused him for me to be there in the night last night.

He was laying so crooked in his bed this morning that he could almost touch the floor with his feet. So when the day shift came on Albert, the PCA we've had for the last 3-4 days came in and got him resettled in bed, and then brought me ice for my Artic cup.

Bill was still breathing very fast and his oxygen was in the low 90s. But, it was his heart rate that was most concerning. It was in the 120s to 130s. He was also warm to the touch. He looked at me and mouthed "help me" and it breaks my heart that I can't help him! I asked him if he wanted to just stop everything and see what happened and he didn't indicate one way or the other what he wanted to do. I think he was just too busy trying to breathe.

His morning xanax, suctioning and cannula change didn't make much of a difference in his breathing or heart rate. Tori, the respiratory tech and I both thought he needed to be put on full vent again so that he wouldn't have to work so hard. The day time tech, Wendy, did put him on full vent after talking to Stephanie.

Janet from infectious disease said she finally convinced Dr. Threlkeld to re-start Zerbaxa, a really powerful antibiotic. She also said that his white count was 22,500. He should start to feel better in a couple of days, we hope.

When Stephanie came in she tweaked the vent some, since he was still having problems. She also said that when the antibiotics kicked in and he was feeling better, she would get him fast-tracked with weaning, doing it a little faster, but not so fast that he's back and forth a lot. It wouldn't really surprise me for them to put him on CPAP at night each time. I think we'll be adding a CPAP machine to our inventory of medical equipment.

He fell asleep about noon and I could tell that he was really sleeping. His numbers were also starting to stabilize. He got the first dose of Zerbaxa and I don't think it works quite that fast, but his numbers were looking pretty good. 

Chris from PT popped in and said that he had talked to the nurse and respiratory and he thought it would be best to just let him rest today and maybe tomorrow he'd be able to get to his chair. He hasn't been out of bed now since last Wednesday.

I came home about 1:30. Bill was OK with that and asked if I would be back in the morning. I told him I would. Usually he asks if I'm coming back that night and I always tell him no, so that's why I think it really confused him for me to come back last night. But, he was good with me leaving and was going to sleep some more. His respirations were still in the upper 30s, but his oxygen level was 99 and his heart rate was down to 107.

I didn't see anyone from cardiology before I left, but I know that Kayla, his nurse had let Dr. Edwards know the situation. I told Kayla I was heading home to sleep and she said she would call if I was needed.

That's it for today. It's not quite 6 and I've eaten, fed the animals and have my pjs on. I'm going to try to stay up a bit longer, but if I can't who cares, there's no one here but me and the cats!

I wish this post could be better but it's not to be. Even though Bill slept most of the day he didn't rest and his numbers stayed in the upper 30s to 40s for respiration. The respiratory tech finally called Stephanie when I was getting ready to leave and he was pt back on the vent in the SIMV mode, not the full vent just the assist mode. 

I felt bad leaving and when I got home I called to check on him and his rate was even higher.  So I changed clothes, fed the cats and made arrangements for them tomorrow and came back to the hospital.  

He's really out now and pretty drugged up but his numbers are better. He did interact with the nurse and he finally acknowledged that I was here but that's about it. 

They ended up putting a midline in for his IV. Janet from Infectious disease said that the Pseudomonas is growing again so Dr. Threlkeld may want to start back with the first antibiotic. I don't think they've hung anything yet but in the 3 hours I was gone they could have. 

The respiratory tech we have tonight is one that has had him in the day so I know he's in good hands. 

Dr Edwards came in and said that he's just gone sideways, not forward or backward and we may need to start taking about where we want to go from here. Bill is a fighter as we all know and I don't think he's ready to give up but I don't know if he's willing to live on a vent and/or a nursing home.  He and I will need to start considering options now. 

This is all very depressing so I hope things will look up in the morning. So lots of prayers for both of us please. As I told his oldest daughter this is one time I don't know what to do. 

Ok, I'm going to try to get some sleep. He's had his meds, his shaky bed, his vitals so maybe they'll leave us alone for most of the night. Goodnight!

Ok, the showdown is over and we compromised. She's still concerned that he is breathing so fast, but his sats are good. I told her this is just something he does and I didn't think going back on the vent would benefit him and she agreed. She did ask if he had ever taken anything for anxiety and I told her he had taken xanax in the past and at what dose. She's ordering that to start immediately and he's going to stay on CPAP today and go to trach collar tomorrow. We agreed that he has lost every bit of progress he had made, even from ICU.

Most of you know that I hate confrontation and was really dreading this, but it went well and I stayed very calm. Now I just want to go throw up!

Bill didn't get his Seroquel until 11 last night. The pharmacy was late sending it. I got here early enough to talk to the night nurse and she said he did have a good night once that came. She's said he had gotten a little agitated in the evening, but now the xanax should help with that.

His new IV must have blown at some point after I left yesterday. But it was not documented. So now they have to try to find a new site.

He's been asleep off and on this morning but since he got the med so late it's not surprising.

That's it for now. I'll update later for the rest of the day!

No change today except that Bill was awake. But, the pulmonary nurse practitioner has said she thinks he needs to be back on full vent at a high rate because he's been breathing fast. That's not going to happen, even if I have to get Dr. Edwards involved.

That's all I'm going to say tonight. But, tomorrow there will be a showdown about it and I'll update then. Wish me luck!

Not really much to tell about today. It was decided to keep him on CPAP for the week-end and try going back to trach collar on Monday. They did another chest x-ray this morning and Stephanie said that it looked a little better in the right lung. The one thing that has changed is the color of his secretions, and the respiratory tech was even concerned about them. They are usually thick and sticky and a yellow brown. Today they are a little thinner but grey green. What is in the collection jar actually looks like a think pea soup. I asked the nurse about it and she thought it could be from medication, but he's not on any new ones and has been off antibiotics for about 10 days.

He slept most of the day again today. I do know that he didn't get his Seroquel until almost 9 last night, which usually makes him sleep most of the morning. I'm hoping that he is just needing the rest to fight whatever is causing the extra secretions.

Cindy from Dr. Edwards office came in and apparently the fiasco of the sling has gotten back to Dr. Edwards. She told me that he is still the attending even though this is considered a separate hospital and that if there are any problems to find one of them, meaning one of the nurse practitioners. She said I know where they can always be found! I told her it was taken care of within an hour, but she said it shouldn't have happened in the first place. And, the nurse that I said probably didn't like me a whole lot that morning just happened to be his nurse today...and she's a wonderful nurse. She was very good with Bill and said that she was so glad they let her have him today.

One thing that Bill has been refusing is the mouth care. I think the wash they use has a little antibiotic in it that tastes bad. I told her when she was getting his meds ready this morning to not give him the option, just tell him it was time to do it. And that's what she did and he opened his mouth to get it over with! The respiratory techs are doing the same thing. If they know that he won't like what they are doing, usually the bed percussions, they just come in and tell him it's time and set the bed. Once it starts they can tell him it only lasts 10 minutes and he will look at the clock to see what time it is. And, he's usually asleep before it's over

When I went to get lunch, I told him I was going and he went back to sleep. I decided that I was going to eat in the cafeteria today instead of taking it back to his room and he was getting agitated by the time I got back. And, then he promptly went back to sleep. It helps him to know that I'm there, but it sure is tiring when all he's doing is sleeping, even though I have things to do. 

I came home the back way today. It was a nice change not to be in all the traffic on the interstate. It took a little longer, but it was a pretty afternoon and a nice drive. May have to do it more often!

One of the nurses said today that maybe when he woke up, he would be a new man. I told her that he was the same old man when he woke up! Then she said maybe I would be a new woman tomorrow when I woke up. We then got on the subject of the rapture and new bodies in heaven! Sometimes conversations veer off into strange directions!

So that's it for today. Maybe tomorrow he'll be more awake, or at least awake for a longer period of time.