This post is going to be short. There's nothing wrong, but nothing really happened. Bill was awake when I got there and in a good mood. He said he slept OK and felt good. Shortly after he was given his morning meds, therapy arrived and he sat and stood and then was moved to his chair. He didn't stand as long as he had before, but he is building stamina.

He sat in the chair for 4 hours, which is 2 hours longer than required, and wanted to stay in the chair, but he needed to change his pressure points. When they put him back to bed, his nurse looked at his bottom, under the pad that is on for protection, and he's getting really red and angry looking. It has not broken down to a bedsore...yet, and she said she can tell that he prefers to be on his back and not his side. They put him on his side and he was not happy. And somehow, he manages to wiggle around until he's almost back on his back again. It wouldn't surprise me if the wound nurse doesn't come and take a peek at him tomorrow.

And, that's all that happened. We did talk some more about him going home and why he can't now. He told me he was sorry that I had to sit there every day and I told him I was making great progress on the afghan I'm knitting for Kayden and besides, it's my job to be there. When I was leaving I told him as I usually do not to have any wild parties with dancing girls, and he said "No fun". But, he was not upset that I was leaving so hopefully he'll do alright tonight.

Oh yes, infectious disease thinks now that he has developed into a carrier for a particular bacteria since it was a little resistant the last time to the antibiotics and the secretions have thickened and changed color. They are waiting on results of the cultures from the bronch and may need to put him back on antibiotics. And that's it for drs. for today. Nurses from the different areas came in, but no doctors.

As I said, a pretty slow day. We'll see what happens tomorrow. It's warming up here and I hope it is where it has been so cold. The news said this morning that by Monday it could be back to...wait for it...70! Just what we need! I'll let you know how tomorrow goes!

I was wide awake yesterday morning when the cats woke me at 4. So, got up and on the road at 6:04, including a swing through McDonalds drive through. When I got to the hospital, there was quite a surprise waiting for me...Bill was up and in his chair and working on one of his puzzle books!
 
His night nurse was still there and she said that he actually woke up about 2 and she tried to get him to go back to sleep, but it didn't work. So about 6:30 she got him to the chair and told him I would be there soon. He was in a really good mood, although he was still coughing some.

Therapy came in about 9 and they worked with him sitting and standing. They used the stander to get him back to bed instead of the lift. It has a section that can close after he is standing to that he can sit. They think that's how he was put in his chair since the sling for the overhead mover wasn't under him, but I don't know because the machine itself was lower than usual and I had to raise it to sit in my chair. But, after therapy he got back into bed. He was going to get back in the chair later, but he didn't want to wait for help. He has it in his head that he can just get up and walk around, and maybe he can. I haven't tried to stand on the stander and of course they therapists are holding a pad against his behind so that he doesn't flash everyone, so maybe that makes him unsteadier. It might be like standing on a step-stool where you don't feel really steady and he might do better just standing on the floor with them holding the pad against him. Hmmm, I'll have to think on that.

He also had the loop running in his head about going home. He even said he had a dr. appointment here he had to go to. He was OK when I left, getting ready to take a little snooze and I was sitting there half asleep, so I came home a little earlier than I have been. Driving home in the day was so different! I even fooled the outside cats because it was still light when I fed them.

I got my first "free" lunch yesterday and it was pretty good, spaghetti with a salad, green beans, garlic bread and applesauce. I told Bill that if it would bother him for me to get the tray and him not get one, that I would decline it, but he said it wouldn't bother him. I also didn't get a choice between the hot and cold entrees so some days I won't eat it since they serve baked fish a lot and, of course, those of you who know me well, know I don't do fish. But, we'll see how it goes.

The person in the room next to Bill's passed away yesterday. Again, I just happened to look up and wee the gurney from the funeral home go by and then the family followed shortly after. I still think it would lend a little dignity if they would just close the room doors as they get ready to pass by.

The student nurse yesterday was Brianna and she is really sweet. She did really well and a couple of the questions she had I could answer instead of waiting for her to grab Kayla. She also explained one of the numbers to me with his blood pressure and how they arrive at it. I won't go into it here, this morning, anyway.

So, that's it. I'm not near as perky this morning as yesterday morning. I'm also a little snotty. I think it's all from the weather. It's supposed to warm up today and the windchills aren't supposed to be as bad. And then warm and rain for the week-end. 

Hopefully we'll have as good a day today!

Yesterday was a much better day than the day before. Bill was awake and in a very good mood when I got there. He was still doing a lot of coughing and getting gunk out and it was really awful looking. It's mostly thick, sticky yellow. And it's so slimy that it's hard to wipe up. OK, so now I've ruined your morning coffee and possibly your breakfast!
 
He didn't want to work with therapy until I reminded that the harder he worked with them, the faster he could get out of there, so grudgingly he did. His blood pressure was better, but his stamina was not. He did sit better and he did stand his 3 times, but not as long as before. They had him get out of bed on the side facing the window so that he could look out, but he kept focusing more on his feet.

Since he was being bronched they didn't move him to his chair, deciding to wait until after if he was awake enough. The bronch was scheduled for 1:30 and about 12:45 Dr. Munday came in and said they would be bringing the scope up shortly, so they were going to do it bedside instead of taking him to the lab. I got an alert on my phone shortly after that that it had been changed to 3:30. I don't know if they were busy elsewhere with other drs. or what the reason for the change was. But, about 3, in walked 2 of Bill's favorite respiratory therapists from downstairs, Crystal and Krystin! He was really happy to see them, and they were amazed at how good he looked. The procedure only took about 15 minutes and when I got back to the room he said he didn't go to sleep. I looked at his nurse and she said he was awake through the entire thing, they gave him a little versed to keep him calm and he was awake through it all! He was still coughing some but not coughing out as much as before. He was also asking me what the next thing was going to be and what we were going to do today, so he wanted to be prepared for it. Of course with his bad memory, he wouldn't remember what I told him anyway.

While he was getting the dressing changed on his PICC line yesterday morning, I spoke to one of the chaplains about meals. Because of the distance I drive I would be able to get 2 meals a day. These are just like the patient trays and would come when patient meals are delivered. I opted to just get the lunch tray since I can eat here at home before I leave and I always have something here to eat at night, even if it's just a frozen dinner. And I've been getting the ones that have more protein. They are pretty good, although whipped chipolte sweet potatoes are not to my liking! Anyway, the lunch trays will start today and yesterday I was given a voucher for $6.00 to cover lunch. So, my burger, onion rings and drink only cost me $.98! I don't know how the meal delivery will affect Bill since he wants to eat so badly. I may have to tell them not to bring them if he gets upset and just eat in the cafeteria. I had quit bringing my lunch back to the room so he wouldn't get upset. But, we'll see today how it goes. I also don't know if I will get to choose between the hot and cold entrees. I know there are some hot ones I won't like, especially the fish ones, so we'll see if they come in when they pick up the breakfast trays this morning to ask my choice.

Chaplain Joseph came by for the first time since we were moved and had prayer with us. He is such a nice man I really enjoy visiting with him. Hopefully he'll be able to come more often.

Bill did not get upset when I told him I was leaving yesterday. He was still in a pretty good mood from the versed. He told me he would behave himself, and hopefully he will. Kayla told me they would deal with whatever he did. We had another student nurse yesterday and she was really sweet, but it must be her first year of clinicals. She did do one of his meds wrong. It's not supposed to go through his tube, but under his tongue. It works better on an empty stomach, but since he had been NPO since about 5 am and she gave the meds a little after 9, it should be OK. The student he will have the next 2 days is named Brianna (spelled just like our Brianna) and she was really nice. She did her initial assessment yesterday afternoon and said one of the nurses we had last week told her she had to have us, we were just so sweet!

That's about it. It is very cold again this morning, yet still warm compared to a lot of places. If I didn't have to go out I wouldn't. I bumped the heat up last night, per an article by a heating/air service, and it still ran almost continually. But, it's not as cool in here as it was last night before I raised it. I'll probably leave it up today and see how warm it is in here when I get home. It's supposed to warm up nicely today and the rest of the week, back up to the 50s and 60s.

So, stay warm and inside if you are in the frigid areas. And stay cool if you are where it is warm. See you later!

It was rough going yesterday. The nurses told me that Bill started acting out as soon as I left. He also only slept periodically again, so was tired all day yesterday. They had to increase his oxygen in the night on Sunday night because his sats kept dropping. The goal was to lower it again yesterday, but that didn't happen. They also told me that Thursday night, he removed his heart monitor leads several times. At least these nurses are used to dealing with cranky, mostly older patients and take it all in stride

His secretions have really thickened again and Dr. Munday is going to do another bronchoscopy this afternoon.  Bill is able to cough them out now for the most part, but they are still having to suction.

The good news of the day is that he can start using the speaking valve, and that could mean that the trach will be reduced so that it fits better. That probably won't be done until after the bronch today, but I don't know for sure.

He didn't do really well in therapy yesterday, only sat on the side of the bed and only stood once. But, his stats kept dropping. He told them he was dizzy and I'm not really sure he was. He is aware enough to know which answers will get him what he wants, and he wanted to lay back down, so he said yes. But, his blood pressure was also staying low, so he could have been dizzy.

He slept off and on most of the day and was really only awake when it was time for me to leave and he got very agitated. I stayed until almost time for his medicine, which is a combination of melatonin and an anti-depressant, with a little xanax thrown in if necessary. He even told me to kill the cats so that I don't have to take care of them and can stay with him! The nurses say that this happens almost every night as soon as I leave.

So, what to do? I can't stay with him 24/7. As one of the practitioners said, as if the idea had just occurred to her "I suppose you have to keep doing all the other normal stuff". Duh! Someone has to pay the bills and do the laundry and take the trash out, you know, normal living stuff. Luckily all of the bills are paid online, but the internet is so bad at the hospital, I won't take the chance of doing them there and I'm so tired at night sometimes I don't trust my brain to do them. So that leaves first thing in the morning, when I'm fresher. The same with this blog, sometimes I do it at night, sometimes in the morning, like today. It depends on how tired I am. I don't know that hiring someone to sit with him at night would be the answer because he wants ME there.

And, while I'm having a pity party, here's how my day usually goes...up at 4:30, feed the cats, do whatever computer work may need done, leave for the hospital at 6ish depending on if I need gas or got it the night before, get to the hospital by about 7:30 depending on traffic and weather, stay there until around 4:30, trying to gauge traffic flow, home around 6 unless I need to stop for gas, groceries, cat food, etc., feed the animals, go through the mail, get something to eat, and some nights I'm in bed by 8 to do it all over again the next day. So, if any of you have had thoughts that all I do is sit at the hospital and knit, then go home and watch TV or socialize, think again. 

OK, enough feeling sorry for myself. I can tell I'm still tired this morning and haven't had enough coffee yet, because I put the grounds in last night but not the water so had to wait longer for it. Maybe Bill will be more sedated than usual for the bronch today and will sleep through the rest of the afternoon and night. It's not being done until about 1:30 and it can't be done bedside as it is in ICU. So, it's a longer process and may use extra sedation.

It's getting close to leaving time. I need to get the car started to warm up. It's only 21 with a windchill of 11, which is a heatwave for some of you, but it's cold for us. So, stay warm and inside if you can. I'll let you know tonight, or tomorrow morning, how things go today.


 

Bill was in a very good mood this morning and said that he slept most of the night. He still did a lot of coughing and was coughing out thicker secretions, but he was getting them out himself.

The staff said that right after I left yesterday he became a little agitated, but then settled down, probably because he got his meds. I was asked by a friend this morning if he was on an anti-depressant and the answer is yes. He's also on an anti-anxiety med. I think a lot of his agitation still stems from not being able to really communicate.

He was off the subject of going home, as I thought he would be after he slept. He did keep saying he needed to get better and I kept reminding him that he is getting better. Dr. Munday said that he sounded a little junky today, but that's nothing new and he said as long as he can cough it up he's not too concerned. He also said that after a couple more days on the trach collar the trach tube can probably be reduced and then he won't be put back on to the vent at all. The tube can be reduced in increments until it can be taken out completely and the hole will close on its own. Hopefully speech therapy can start working with him again this week, at least on speaking and using the speaking valve. He wants to talk so badly and it's really hard to talk around the trach. It's supposed to be impossible but he's found a way to do it.

When I went to lunch today he actually called for the nurse and asked for a bedpan, which is also a breakthrough! The PCA came in and told me after I came back. I also found out that I can get at least 1 meal a day through pastoral care, and should have been getting it from the time he was admitted. The nurse was rather disturbed that I hadn't been told that before. So, they are supposed to come in tomorrow and talk about it. We're lucky that we have the means for me to go back and forth and I usually only eat 1 meal at the hospital. I also am not spending what I would spend on groceries if he were home, so it really evens out some.

That's about it for today. Hopefully therapy will really start to work with him more this week since he's gotten so much stronger both mentally and physically. Even the nurses on this floor have noticed a difference in him from day 1 to day 10.

I'll be back tomorrow!

I can't seem to do anything right this morning, so who knows what will show up here! Maybe if I just slow down and drink some coffee! I was trying to make hotel reservations for Bill's sisters upcoming stay and got a fantastic rate, booked the room (should have been rooms but didn't catch it until too late) and it shows I have a reservation FOR TONIGHT! It also says I can't cancel it online and the desk clerk at the hotel must be sleeping at 5 am! Anyway, another thing to add to my list of things that must be done today! I also tried to change the reservation and I don't get the fantastic rate I do for tonight.

Bill was still on trach collar when I got there yesterday and the order is to stay on trach collar unless he starts getting into distress. Then he goes back to either CPAP or vent. He did really well, but he's still on a pretty high flow. I'll have to ask the therapist exactly what the flow is. I can't see it well from where I am in the room.

He was in a strange mood yesterday, didn't want to talk, didn't want the TV on, was very docile when it came to meds, etc. I don't know what was going on in his head. They said he had a good night.

He did have several bowel movements, one of them rather large and messy that took 3 of us to clean up, and they were able to get the sample to test for c.Diff, which was negative. The nurse and I both knew it was just from the smell. So, now I don't know what caused the spike in his white count.

He did finally watch some TV late in the afternoon, and then started in on coming home, asking me what time we were leaving and where his clothes were. We had quite a conversation about that and I could tell by the look on his face that he was really angry that he wasn't getting his way. I think this was actually triggered by Dr. Munday saying that he was on the right track to getting to go home, and all he picked up on was going home. He also said he can't call anyone, until I reminded him that he can't talk either. But he said I could call and talk to him and he could listen. He was in a little better mood when I left about 4:45 and hopefully he didn't act out afterwards.

He did do one thing yesterday...he asked for his teeth! So, I washed them up and he put them in. They still don't fit quite right, or maybe it's just that he has been without them for so long, but his mouth looks a little distorted to me anyway. But, he smiled at the nurses and they said they knew something was different. It also makes it a little easier to read lips.

One thing I don't understand about this hospitals and skilled nursing centers, is the cutback on staff on the week-ends. There are still the same number of patients, so don't you think you would still need the same number of staff members on Saturday that you did on Friday? There was only 1 PCA for the entire 20 room wing yesterday. They also have no one assigned to answer call lights. I called for assistance since he had a bowel movement and the PCA came in and emptied his urinal and when I told her he had a bowel movement, she said "Oh, he had a bowel movement?", and took off her gown and gloves, sanitized her hands, and left the room! I thought she was just going to find someone to help her, but after 30 minutes I called again and when she came back I asked if she was going to clean him up and she said she had heard what I said, it just didn't penetrate her brain and she had moved on to another room. After he was clean I told him I was going to get some lunch, and who do you think I ran into...yep, the PCA. I think she was concentrated more on lunch than patient care!

I think Bill is becoming somewhat depressed and who wouldn't be after so long in the hospital, so I have a favor to ask of all of you readers. His birthday is coming up on Feb. 23. I think it would cheer him up to receive some cards. Of course, if you don't want to wait that long, just a get well card, or a note of encouragement would certainly help. The address for the hospital is:

William Haven
Baptist Memorial Hospital
Restorative Care Room #4237
6019 Walnut Grove Rd.
Memphis, TN 38120

 Thought you might also like to see a picture of this handsome guy with his teeth in!

That's all for today. Now on to the next thing. It's almost time to get ready to go, but it's Sunday and traffic will be smoother. I'm also feeling a little rebellious this morning about getting up and out so early. I know he is well taken care of, I just hope he slept last night and is not giving them any trouble this morning!

Bill is back to trach collar! He was very tired all day today, but they said he had a decent night but woke several times. Before the switch from vent to trach, they put him on CPAP for a couple of hours and during that time he worked with therapy some. He didn't stand as well, or sit as long on the side of the bed and he was sluggish moving. He also didn't want to sit in the chair. We think he was just worn out from all the work he did yesterday.

Shortly after therapy left, he was put on trach collar. He did a lot of coughing to start, which is normal, and they did a couple of deep suctions and got a lot of secretions out, but none of it was terribly thick. Some of what he coughed out was thicker, but he was still getting it to move.

He spent most of the day asleep and I decided to leave a little early. The brisket from last night did not sit well on my stomach and it was a little upset most of the day. I also knew that I would have to get gas and needed some groceries. He was just waking up when I decided to leave and he was OK with it. I again closed his blinds. I asked if he wanted something different on TV since I had been watching old movies, but an old western was coming on and he said it was fine.

They were going to put him back on the vent for the night, but I don't know what time they were planning on doing that. I was just impressed that his numbers stayed up as well as they did. His sats stayed in the 90s most of the time and his oxygen concentration was set at 50% at 11 liters. That's a high liter amount but hopefully they will get it back down to where he was before. That was part of the problem with weaning in ICU. They couldn't get the concentration below 70% and he was at 15 liters. That's a lot of oxygen. They would like for him to be at 40%, but they had bumped him up a little at one point for something.

So, a pretty eventful, uneventful day with him sleeping most of the day. AND, I actually had a little conversation with Dr. Fox! We talked about the movie I was watching "A Face in the Crowd". It has an excellent cast, Patricia Neal, Andy Griffith, Walter Mathau and a few other big names I can't recall right now. It wasn't a long conversation, but it's the most I've talked to him!

A little short story...there's a southern gospel song that says that we always pray for the big things, but we also need to pray for the little things. We all know how prayer has worked with Bill's illnesses and how many times he has brought him through, so that's the big thing. Every day when I driving through the hospital campus to leave, I thank God for whatever day we've had, thank Him for the good things, acknowledge the days that aren't as good as His plan and then I ask for a safe trip home, including getting safely on the highway. And so far, I have not had any problems! I have to immediately cross 2 lanes of traffic, and 3 lanes if possible to be where I want to be. And it seems like no matter what time of day I leave, I'm able to get to my chosen lane without a problem and most days there are large openings. Well, this morning I used my drive to acknowledge that I haven't talked to Him as much in the mornings, so spent quite a bit of my drive in prayer. And lo and behold, the traffic at my exit which is usually terrible, was almost nonexistent and all the merging that has to be done, with other traffic coming from a different direction wanting to merge where I am, was a piece of cake! I know, I know, I needed that little smack on the cheek telling me to wake up. So, just a little testimony for the evening. 

All for tonight. It's almost my bedtime. Could have some snow flurries for the drive in the morning which will be fun! Goodnight!

And the pattern continues...Bill had not slept much and he's starting to sundown some. They said he became agitated just after I left. That's why they give him his sleep medicine so early in the evening. But, after explaining for the millionth time why he can't go home yet, he settled down and had a good day.

He was already back on CPAP when I got there and only periodically did he say that it was hard to breathe. But, again, we told him that it's because he was doing all the breathing himself and it was hard using those muscles that hadn't been used for so long. The goal was to keep him on CPAP for 8 hours and then back on the vent at night, again at a very low rate. He made it until 4 and unless she had just switched him before I got there between 7:30 and 8 and was just going by 8, he was on for 9 hours. Even after he was switched over he said it was hard to breathe, but the way he was gesturing, he was feeling the vent breathe for him, and he didn't like it. The vent is only set on 4, so it only breathes 4 breaths per minute and he does the rest.

He stood for nearly 2 minutes in therapy and sat on the edge of the bed in between, and then sat in his chair for 2 hours. He started to complain, but I told him he just had to watch Gunsmoke twice and when it was time for me to get lunch, he could get back into bed. He did have to use the bathroom right after he got in the chair and the PCAs decided to stand him really quick and slide the bedpan under him and that worked really well. But, after that he worked his puzzle books and watched Gunsmoke and was fine.


The afternoon was quiet with drs. and nurse practitioners popping in and out. Dr. Munday is pleased with his progress, and cardiology said he sounds better. He didn't need suctioned much, but he did get one deep suctioning that got some stuff out. The secretions aren't thick like they were, at least to me, they are clear and somewhat foamy. 

Ashley, from Dr. Threlkeld's office, said that his white count has spiked again, going from normal to 19,000 and since he's got mostly liquid stools, they are wanting a stool sample to check for c.diff. But, that has a very distinct, horrible odor, and his does not. It's not pleasant to smell, but I've smelled worse. So, I don't think it's that, but who knows. I don't know if they are running any tests on the sputum that's collecting in his little jar, and I know they've done some blood tests, as usual, so we'll see what pops up. He's been without antibiotics since Sunday so who knows what was still lurking.

When I left yesterday I made sure I shut his blinds to darken the room some and I had stayed later to see if that helped with the sundowning. But, I had been up since about 3:30 with the cats and was tired. It was a good thing I had only eaten about half my lunch, so I had dinner ready. And, I couldn't eat it. I'm finding that beef (barbecued brisket, which was wonderful) doesn't want to go down easily. But, I had eaten enough and the episode didn't last long. 

I was in bed by 8:30 and slept well, but Mouse started in at 3. I finally got up about  4:15. I still feel tired so it will probably be another early to bed night for me again.

So, that's it. Today should be a trach collar day. I don't know how long they will plan to leave it on him, probably depends on if he can keep his saturation high enough. I'll let you know!

Bill was bright eyed and bushy-tailed yesterday morning. He had slept well, been bathed and shaved and was ready to go.

When therapy came in they asked if he would sit on the edge of the bed and he agreed. They arranged all of the tubes and lines and told him to move his legs to the edge. Usually he'll move them once and they have to help to get them the rest of the way. But, this time he moved them all the way over, grabbed the railing of the bed and pulled himself up! This was a first for him! He sat upright with no support. Since he had done so well, they asked if he wanted to try to stand and he nodded, so they got the Sara Steady, which is a stander/mover that can just be used for someone to stand or parts can be moved to make a seat and patients can then be rolled around a little. They locked it down and he grabbed the bar and pulled himself up! He stood, with back straight and head held up for 30 seconds. He then sat for awhile and did it again for 15 seconds, sat and rested, then stood for another 30 seconds. All in all, when he said he wanted to lay down, he sat on the edge of the bed for 10 minutes and stood for 1 minute and 15 seconds! He didn't want to get into the chair so I told them I would see if the nurses would put him in later in the afternoon.

The speech therapist came by to tell us that Dr. Edwards wanted to hold off on speech unless it was just exercises, no swallowing with ice, until he was on trach collar. I don't think he gave a reason, and she was rather confused. I think he's trying to avoid him aspirating right now since it all becomes pneumonia. But, we may not see much of her for a bit.

While I was at lunch they turned the vent off and put him on CPAP. He complained most of the afternoon that he couldn't breathe, although his numbers were excellent. We think it's just because the machine was not helping and he was not inflating his lungs far enough himself. But, he started having a small panic attack and his heart rate and respiration rate went up, so about 4:30 he was put back on the vent. Diane told me that was the plan anyway. I thought that when he went to CPAP he would stay on it until he went to trach collar unless, of course, he had a big problem, but she said no, it's still a weaning process. So a 4 hour start was good.

He was also coughing a lot of foamy secretions yesterday and had to be suctioned more than he had the last few days. I mentioned that this was the longest he had gone without being bronched and Diane and the student therapists wanted to know how often they were doing it and were very surprised when I told them every 2-3 days. I would have to go back over notes and here to be sure, but it was frequently.

He was resting better when I left and it was almost time for his meds. Since he had such a busy day, I hope he did sleep last night. If his new pattern held, he did not and today won't be such a good day, but since he was more active, hopefully he was tired enough. He did not nap any during the day.

That's about it. The response time for the staff was a little lax yesterday. Bill asked for a bedpan and finally another PCA came in and he had already gone. Another time another nurse brought it in and got him on and a different nurse got him off. He still had more on him than in the pan from the way he was positioned. But, patients were moved all around yesterday and maintenance was up and down the hallway and there were students everywhere. Still no excuse and I'll watch again today. When he asks for the bedpan it should tell them that he can tell when he has to go, and I'm specific when I call them. I may see if there's an alternative to the diapers, something that he can wear and still be able to use the urinal, yet can be pulled apart easily if he does mess them. Surely they exist, even if I have to bring them in myself.

I did stop in and visit with the nurses in ICU. They had all been wondering how he was and of course they made me cry. I told them to come and visit him and they said they wanted to see him walk into the unit to see them! So, something to shoot for.

It's time for me to start getting moving. It's cold this morning and frosty and now I really wish I had stopped for gas on my way home last night instead of waiting until this morning. But, it's not raining! That drive yesterday was brutal in the wind and rain! See you tomorrow, or tonight if I'm not too tired!

It's cold and rainy this morning, a good day to sit and read or knit. And I will do both, or either of those things...when I get to the hospital and dry out! Memphis should be fun this morning!

Bill was awful before I got there yesterday, and for a lot of the day. It wasn't because I wasn't there (remember I had some business to take care of), he just didn't want anyone to touch him. He also hadn't slept again. We are seeing a pattern of sleeping every other night and then he usually sleeps all day, which he did not do yesterday.

He had used the bathroom and the only way I knew was a dirty gauze pad on his tray table. So I checked and when the PCA came in to clean him up she said he tried to hit her when she tried earlier and she wasn't going to stand for that. This is the aide I wasn't real sue about the first day and I had 2 thoughts on it, no, you don't have to take abuse from patients, and the other was he's a weak man, get some help from his male nurse. They had also unplugged his call button from the wall. I guess if he had really been in distress the vent would have alarmed.

Anyway, I told Bill he was acting like a 2 year old and the kids got spanked when they acted like that. He finally let her clean him up and let Dallas give him his medicine, which was now 2 hours later than it should have been, and not in the 2 hour window allowed. So, he and I had to have a talk. He was writing again, but this time I could read it. He basically wanted to leave, he wants clothes, he wanted me to kick all of these people out of the house (don't know where that thought came from). Most of his tirade came from wanting clothes on. I finally told him I was not taking poopy underwear home to wash so until they said he could have clothes on, he wasn't getting any.

When I left to get lunch he used the bathroom again and when cleaning himself from using his urinal he used half a box of tissues trying to clean himself. The aide said he actually did a pretty good job, but there was stool all over his tray table. So, while she cleaned him, I cleaned that.

I ran into Caleb from ICU in the cafeteria and he came up to see him. He's also going to get me some more of the good gowns. All they have on 4 are the plastic ones that make you sweat. To sit all day I like the cloth ones and since I don't have to toss them each time I leave the room, I can just leave it on my chair. But, since I got it dirty yesterday, I had to use my last one. He told me to give him a bit, they didn't have anyone in isolation and he would have to order some and put one back for me.

We also had a surprise visit from son Joe! He was in Memphis for a court hearing on his SS disability, which he finally won. We hadn't seen him for quite awhile and it was a good but short visit. 

The picc line nurse came to change the dressing on his picc line so Joe and I were banished from the room. When I got back, therapy was there. He had already done OT and worked on his shoulders...without complaint. He impressed the therapists with how much more he was able to move about. He sat in his chair and they gave him the little pedal machine they have. He pedaled about 6 minutes I think, and his numbers stayed pretty stable. He didn't complain about being in the chair. He just sat and worked his puzzle book.

His vent was turned down to 4 yesterday and a few times he complained that he couldn't breathe. I think it's because he was having to do more of the breathing on his own since it was only giving him 4 breaths per minute. Quite a change from 15 a week ago. I don't know if it will stay at 4 or if he will go to CPAP today. I guess I'll find out when I get there.

He was in a much better mood when I left. Dallas had put him back to bed, gave him his night meds and hooked up his new bag of food. He said that way he wouldn't have to be disturbed too much. I told him if they can keep the room as quiet and dark as possible, he might do better. I'm hoping that since he hadn't slept in the day at all either that he would go to sleep and sleep all night. I didn't get any calls, so I guess however the night went, he was manageable.

That's it for this time. I'm hoping the rain will let up enough to feed the outside cats, but they will forage if necessary. It's not raining quite as hard as it was, but still raining. And I need to get dressed. I'm so glad I did laundry last night, at least I'll have clothes for a few days anyway. Stay dry and warm or cool if you're in a warm spot.

For those of you who were looking for this post last night, I was too cozy curled up on the couch to get the computer. I also knew that I was going to the hospital late today so I would have plenty of time this morning.

It was an excellent day yesterday. Bill was awake and in a very good mood when I got there. He apparently had a good night and got some sleep. He did ask several times when he could go home but seemed satisfied with the answers he got, not just from me but from therapists.

He had speech therapy again and she showed him some exercises to do. I'll have to make sure he does them when he's watching TV or I don't think he'll do them at all. Maybe telling him that he can't eat or drink until he masters them will work. She still did some ice chips but he didn't have the problems he was having before. He was doing a lot of coughing yesterday and it looked like the secretions have thickened some again, but this is the longest he has gone between broncoscopies. He's been in this unit for a week today and his last one was before he left ICU.

Physical therapy came in and they were impressed with how much better he was moving around. He was able to help them get to the edge of the bed to sit and he made it 10 minutes with minimal support. I wish the bed was level, it would be easier for him to keep his balance. He sat in his recliner for 2 hours and he did complain some. But I reclined it a little for part of it and that seemed to help. I noticed that his feet weren't touching the floor, and it is a very deep chair, so he must have been way back in it. He finally wiggled himself down some and sat the way that is normal for him.

The dietician came in and said they were going to keep him on the higher calorie formula. I don't know if I said that the hospital had run out of the one he was on, twice, so she put him on the same one, just a higher calorie count. She adjusted the amount he gets, and he's doing very well on it so she's going to leave it. Bill did tell me that he feels hungry, but whether he does, or just thinks he should eat, I'm not sure.

Yesterday was also the last day for antibiotics. His white count has gone down to an acceptable level for Dr. Threlkeld so they are just going to monitor and see what happens. Of course if he needs to be put back on them they won't wait too long to do it.

His vent was at 6 so today is the change to the magic number of 4. So far he hasn't had any problems with keeping his numbers up and he's recovering faster from rolling or coughing. If he does well today, he should go on CPAP tomorrow and by Friday, should be back on trach collar. Dr. Munday is pleased with that progress.

I'm going late today to take his VA certification to the courthouse. The tax collector has to have it on file. Because he's 100% disabled, he is exempt from paying personal property and real estate taxes. It also gives him reduced fees for car tags and lots of other perks. But, I want to get it up there before the cats knock it off the table and it gets lost. I also have some meds to pick up. So, I get a little easier morning than usual. The trade off is that I'll probably have to park on top of the parking garage.

I did get some news yesterday that eased my mind. Our new social worker came by and I had to sign another paper showing that we were using our reserve Medicare days. But she said that when those days are used up, Tri-Care will kick in and become primary. And once the deductible is met, it should pay 100%. That made me feel so much better! I couldn't remember the day that I had signed the other one so I looked at it last night and we are 10 days into the reserve.

I also got to thinking last night about Bill being in the hospital. I've been basing everything on Dec. 2, the day he was airlifted, but he hasn't been home since Nov. 15 when he was re-admitted. He was there until he was transferred on Nov. 29 to skilled nursing and then back on December 2. So, he's already spent 2 months in the hospital/skilled nursing with who knows how many more to go. No wonder he wants to come home!

Don and Shirley, Bill's sister and husband, are coming in February for his birthday. They won't be here on his birthday, but are coming a few days before. It will be nice to see them. I think I may just stay in Memphis with them. It is also coming at a good time as I have an appointment with my cardiologist on the 18th, so they will be able to stay with Bill while I run down the road to that appointment. I know she's not going to be happy that I'm not drinking enough water again, but these are extenuating circumstances and I'm living on caffeine. Not totally, I'm eating and trying to eat at least 1 healthy meal a day. Most days it works, some it doesn't, but I'm eating!

So, that's it. Hopefully Bill won't drive the staff crazy today like he did the last time I was late. But, all the staff knows, especially Tee, the aide who told him she called me to find out where I was. It won't take long at the courthouse or the pharmacy and then a quick swing through the gas station and I can hit the highway and be there by about 11 at the latest. It's really windy today and I don't think it's going to be a tailwind either, but right now it's really howling. Until next time...

The cats let me sleep until nearly 5 this morning! That 30 minutes actually made a big difference. By 6:15 I had started my car and brushed the loose snow off and then came in for more coffee and some hot cereal. Then restarted the car and got my stuff ready and finished clearing off the car. I was on the road by a few minutes after 6:30 and the only bad place was the on ramp to the interstate. But, the wind was still a little high so overpasses were still a little tricky.

Bill was awake when I got there and his nurse said the night was pretty wild. He did tell me he had been bad. There were a couple of magazines and a Readers' Digest on his table, but not his puzzle book and pen. I also couldn't find the eraser for his white board. I did find the pen later, stuffed into his tissue box, along with a washcloth! Laura said she had seen the eraser and we think the puzzle book got swept up with bedding or something. No big deal!

Laura told me that he got very agitated almost as soon as I left yesterday. But, he was really agitated most of the day with his obsessions. She gave him a Xanax about 3 and then his night meds at 5:15. She's thinking this may just be a developing pattern with him. I wish Dr. Edwards didn't round so late because I never get to talk to him.

Bill was docile today and shortly after I got there he was put into his chair. Usually he starts griping and wanting to go back to bed after the first 30 minutes, but today he sat in it for 6 hours! He only got back into bed because they came in and said he had to go back to bed. He probably didn't gripe much because he slept most of the day. I also think he was dreaming of his military time because he wrote something about being overseas.

He told me that he would behave and sleep tonight, but since he slept all day, I don't know.

The vent was set on 8 today and where my chair was placed I could see the monitor for his sats and heart rate. The only time his sats dropped were when he was coughing, or shifting in the chair. He did a good job of helping when they were getting him into bed, rolling when they told him to, etc.

So, even though being in the chair that long is a major accomplishment, nothing much happened. It will be interesting to see what goes on with the new week starting tomorrow. I'm sure he'll get back in his chair and I wish they would use the stander to get him there instead of the sling. Or, they at least need to do something with his legs.

I think a podiatrist has agreed to come and bill it as an outpatient visit. It isn't covered by insurance and will be $100, and he said it would be the same at the hospital or if he was at the office. I said I will give him cash, write him a check, give him a credit card, whatever he wants, his feet need attended to. So, tomorrow we'll try to get that set up.

I hope the sound I just heard was the cats under the house! It was just a clang so I'm thinking they hit a pipe. All of those boys under there get a little rowdy at times. And, it is so cold I'm sure they're trying to get as far under as they can. 

So, there you have it. I'm about ready to call it a day and head for the bed. I think both of the cats are about ready too. They've each had a little lap time so maybe they are both ready to settle in for the night. I know I am!

Due to weather conditions today, this was a short day at the hospital for me. Woke up to thundershowers and heavy rain, so left a little later, but since it was Saturday, traffic wasn't too bad.

Bill had been asking the nurses for his phone. I told him that it was at home and when he could talk I would bring it to him. We then had to cover where all of his valuables were. This is not something new, since the transplant and stroke, his brain sometimes goes into an endless loop and stays on the same subject for a long time.

His vent was turned down again to 10 today and he did pretty well. He did some coughing and that would make it alarm, or his sats drop below 88. But he recovered quickly.

He also didn't have as good a night. He did sleep some, but he became agitated about 4:30 and had to be given some Xanax. And, that's about the time I left, I think. He may need to be given a maintenance dose of Xanax instead of a larger one when he panics, especially since I can't stay with him 24/7.

 He had been diapered in the night and his day nurse was not really happy about it. It made it hard for him to use his urinal and he can't just go in the diaper because they are still measuring output. She said it was more for the convenience of the PCA. They are supposed to turn him and check him every 2 hours anyway, although he's moving around pretty good now. I noticed today that when they turned him to his side, didn't matter which one, he would wiggle around until he was on his back.

He was writing quite a bit on his white board today. I told him at one time he had to write bigger because I couldn't read it as small as he had written, so he wrote B I G G E R and then started writing too small again! Mainly he was asking about food, lunch, something easy to cook, coffee, and going home. He feels like he's just wasting away not being able to do anything. So, we went over how I can't take care of him with the vent and he'll need to work really hard in therapy. And, just when I think it finally made it past the roadblock, it would get stuck in the loop again.

We were due to get some freezing rain and snow this afternoon and evening and when the radar showed that it was getting close I told him I had to leave to make it home safely. He was quite upset at that and we both had a little cry again. It breaks my heart when he cries and I know he gets scared when I'm gone. But, his nurse was Laura again, so I know he was well taken care of. 

My drive home started with just some mist and then light rain, progressing to a rain/snow mix and finally snow as I turned off the interstate. We were only supposed to get a dusting, but we probably have 3 inches. I'm basing this on looking out the window at the top of my car. Tomorrow morning may be interesting. The weather advisory we have is calling for black ice to form from the rain on the roads. I told Bill I would call and let the nurses know when I was leaving. Laura is on again tomorrow so she'll keep him calmer. I may just have to leave after daybreak so that I can see the road more clearly. And I'll check the iDrive Arkansas app. It will show what the roads look like.

We also have a wind advisory and the house feels cold from it. I really hope we don't lose power. I can go out and start the generator, but it won't run the furnace. But, there are plenty of blankets and there are 2 space heaters in the apartment and only 1 is being used, so the cats and I would be comfy. Now, why didn't I bring in the other heater when I was in the apartment checking to see how warm it was! Oh well!

That's it for this short day. There are so many in the path of this storm, stay warm and safe. 

I was met at the nurses' station by a very grateful nurse and respiratory therapist! Bill forgot that I was going to be late and even after reading the message I left him, he insisted they call me and find out where I was and how long it would take me to get there! His aide came in and said "See, I told you I called her and she said she was on her way", all the time winking at me. He had written help and his name and my phone number and help again on the white board! 

His nurse said he didn't sleep as well last night so we talked about timing of the meds. She thought giving them later in the evening would be better, but I told her they had tried that in ICU and he wouldn't go to sleep until 3 am and then want to sleep all day. I asked Kim from Dr. Edwards office about it and she wants to keep it at 6 to see if it will regulate by itself. Hanan, the nurse came in before I left and said that she checked to see when he had been given the meds last night and they gave them at 4:30, so she was going to wait a little longer to see if that helped.

Bill had had an accident in his bed and pulled some of the dirty padding out himself and put it on his tray, but his gown and legs were covered and he had gotten some on his hands. He was quite a mess, but Tee and I got him cleaned up. And, yes, I know that's not my job. But, I was already gowned and I just helped him turn and held him steady. He was much better at turning and moving today than he had been.

As soon as we got him settled, therapy came in. He sat on the edge of the bed for 7 1/2 minutes. I told Chris that I had told Bill that he (Chris) wasn't going to take no for an answer about sitting in the chair today so he nodded and into the recliner he went. He was supposed to stay 2 hours and he started griping after 30 minutes. He did get a little reprieve since he needed to use the bathroom again and it's easier in the bed.

I asked the respiratory therapist, yesterday and today it was Diane, what numbers to look at on the vent to see what was being lowered to wean him. She showed me which one and that when it got to 4 they would then switch him to CPAP for at least 48 hours before putting him back on the trach collar. I think the number we are watching is the number of times per minute the vent breathes. It was set on 15, which is what it had been in ICU, but she lowered in to 12 today. I don't know the increments they use, I think it probably just depends on the patient.

Bill is really wanting to eat and drink. He also wants to know how long he will be there. I know it's frustrating for him not to be able to communicate easily and he still doesn't remember anything about what happened. He does know where he is now and he asked me today how much this was costing us. I told him insurance was paying for it and he didn't need to worry about the money, that was my job!

Late this afternoon I finally got him interested in a puzzle book, but he was still a little antsy and I could tell he wasn't concentrating well. He wanted to know where his rings were, and his watch, wallet and keys. And, even though we've been over this all before, I told him again and showed him that I had his rings on my key ring. Usually I wear them around my neck, but I couldn't fasten the chain this time. Old fingers I guess.

I had one of the telephone conversations with Mayo that I had been dreading. Stephanie had called, and Memphis had been in contact with them. She asked several questions and we then decided that as much as we hated to do it, we needed to switch his care to Memphis. I don't think Bill could make the trip anymore. She said to tell him that she and Dr. Yip and Dr. Patel were all thinking of him and to give him a hug. Of course, by this time I was in tears and thanked them for giving him back to me 6 1/2 years ago. She said it was my care as much as theirs, that he and I were a good team and worked together. As much as we didn't want to do it, I think it's for the best. And if anyone is wondering what the other call to Mayo I had been dreading was the one that would tell them he had passed away.

Dr. Mullinax came by this afternoon and said that Bill had been discussed in the transplant committee meeting. I still think they can believe that he has recovered as much and as fast as he has. And it has been fast, even though it's be 6 weeks with most of it in ICU. They didn't expect him to survive to begin with and, if you remember right, thought he should pretty much go straight to hospice. So, he's teaching some lessons in humility I do believe, and to never underestimate the will of a patient to survive.

That's it from today, I think. There won't be any therapy done over the week-end, but the nurses may put him in a chair for awhile. It does him so much good to get off his lungs. I may have to work that angle on coming home faster. 

We're supposed to get some snow tomorrow night and it's supposed to get really cold by Sunday morning. I think I am coming home from the hospital mainly to keep an eye on the house (power) and the cats. I don't think it's supposed to be enough of a "storm" for us to lose power, but who knows. For those of you in the path of this storm, and the one coming behind it, stay safe.

Oh yes, my friend from church is responding to questions! They have started dialysis and her blood pressure is stabilizing! So, it looks like my prayer for a peaceful transition got the "not yet" answer, and I'm glad. She's had so many people, including children from church, praying for her to recover, those are the ones that have been answered.

OK, that's it. Goodnight!

What a difference a good nights sleep makes! Bill slept all night and was awake and aware when I got there. He couldn't talk much because the therapist had a lot of air in his collar, but he was in a good mood.

They had taken the catheter out and put the condom catheter on. He had not urinated since they had done it and a bladder scan showed that it had about 500 ccs  in it. But Laura, the nurse, was not overly concerned. So, he and I talked about that and how he needed to say when he felt like he needed to go. He would tell me and I would tell him he could just go ahead and if he needed to hold himself as he would normally, that was OK. He did go some, but the condom wouldn't stay on. She tried several different kinds. It seems like they are geared more for someone who is circumcized. Anyway, one time after he told me he had to go and still hadn't, I asked if he could use a urinal. At first she said only if I was in there with him, but I told her he had been using one in the night at home and she agreed. And he did use them! I think they were going to use an external catheter tonight, just in case he didn't wake up if he had to go.

Dr. Munday came in and, after talking with the respiratory therapist, explained that they have a different protocol for weaning from vents than they do in ICU. Where Bill is, they have the vent doing most of the work. He used his hands like a scale. He said they watch numbers for a day and then lower them to let the lungs work more until they have evened out, or the lungs are doing most of the work. They then go to the trach collar. He said it will probably be about this time next week that he'll be back on it. But, he also said that anytime we wanted to go to trach collar we could. He tried to let a little air out of the inner collar so that Bill could talk, but all he did was cough and choke and set off alarms. I think the actual culprit was the ice chips the speech therapist had given him. Instead of really swallowing, he was just letting it melt down his throat and it had pooled at the top of his throat. So, air was added again and even though he was still coughing some when I left, he was using his mouth suction on his own.

He sat on the edge of the bed with physical and occupational therapy for 5 minutes with minimal support and did a much better job of holding his head up. Chris, the physical therapist who is from Australia, wanted him to sit in a chair but Bill said no, so they put the bed into chair mode. He also combed his hair, washed his face, and cleaned his mouth for the occupational therapist.

(I had this post completely finished and it just turned blue from here on down and it's gone. Of course I don't remember what I had typed either).

All in all it was a good day. I came home a little early because the weather was starting to get nasty. It had rained most of the day and was starting to get foggy. I'm glad I left when I did to get home close to dark, the fog was really bad on the highway, once I got out of the towns. It's supposed to be that way in the morning, but I don't have to go early. I did find Bill's other glasses so brought the pair home to get repaired. I'll go to the eye dr. when they open at 8 and then head down. I left him a reminder note on his white board so he won't panic when I don't show up early.

He asked several times when he could come home and I told him that depended on how hard he worked to get off the vent, lose the trach, swallow so he could eat and be able to walk again. It's a lot of work but I know he can do it. Getting the catheter out was a major step, and came sooner than they thought. I think again, it was a case of them thinking it would be permanent. They just don't know him!

And, now, since I can't remember what else I may have said, I'll stop. If I left out something major, I'll make it up tomorrow. Have a good night, or day, whenever you read this!

I'm really tired again tonight, although it just really hit me. I've been busy since I left the hospital, Walmart, gas, put groceries away, feed cats, feed me, clean litter boxes, take trash out and to the curb, look for Bill's other glasses. And now that I have finally sat down, I hope I can remember everything from today.

Bill did not sleep at all again last night and Emily got a call from the hospital about 6:15 this morning that they had to restrain him. I don't know why they didn't call me, but she did as soon as they hung up.

He was on the vent, which is the plan, but I thought he was supposed to be on CPAP mode instead of full vent. But his respiratory therapist, who I loved at first sight, said they don't do the CPAP mode, it's vent or trach collar. He was still breathing a little fast so she didn't want to take him off the vent until he could slow his breathing. She finally put him on it and he had a hard time keeping his sats up consistently so she put him back on the vent. We think that he is just so tired that it took too much effort to breathe deeply. His therapist, Ms. Bettie, is 70 years old and has worked at Baptist for 45 years! She's a gem. She told me that as soon as she walked in the room and I was there she knew she would like me. She does like family members who know what's going on and can give some history. 

Occupational therapy came in and evaluated Bill's strength in his arms and shoulders. I told her that he was fully self-sufficient when it came to dressing and care before this and she was impressed.

Physical therapy then came in and they got him to sit on the side of the bed for a bit. But he was a bit hung-over yet from the meds that didn't put him to sleep and he finally told them he was going to lay down and just leaned over. So, they got him back to bed but put it in chair position. They also said that if he wanted to get up into a chair the staff could move him with the overhead lift.

When Dr. Williams nurse came in I told her about the sleeping meds and she said she would write the order to add the Respiradol back. His nurse was going to give them to him about 6 so they would get to work early. But, he was sleeping really hard when I left at 4:30, so hard that I couldn't wake him, so I don't know if she did it then or not.

I asked Dr. Edwards' nurse who wrote the order that the catheter was not supposed to be removed without an order and told her that Dr. Morris, the urologist, had signed off on him. She said she would check with Dr. Edwards and Laura, Bill's nurse today, said they were going to try the condom catheter again, but if he's going to be knocked out, he may not realize he has to pee. Something to check on first thing in the morning.

So, it was a day about the way I thought it would be, evaluations and such. I did notice when Bill's restraints were removed that he had a huge bruise on his right wrist. I brought it to the attention of his nurse and the social worker. We are all pretty much in agreement, that since there was no corresponding bruise on the left wrist, he had actually done it himself by reaching for his left hand. I saw him doing this after I got there and I think he was trying to get it to his left hand to untie it. Laura may have decided to have the wound care nurse look at it. She came in to evaluate the places where the ICU staff had placed precautionary pads, but he was sleeping really well so she didn't want to disturb him.

That's how the day has been. I did find out that a dear friend from church has had a heart attack and stroke and she is on life support with her kidneys shutting down.The outlook is pretty grim and they were planning on an EEG to see if there was any brain activity. I'm sure her family is devastated because she has always been very healthy and active. But, my prayer was for the end to be peaceful and for her to hear the words "Come home, my good and faithful servant". 

OK, enough for tonight. I'm going to finish my drink (just Diet Coke), set up the coffee for the morning, and head for bed. Mouse is going crazy racing through the house and sliding on empty boxes that he has flattened. Cat is laying behind me on the back of the recliner, out of the danger zone. Goodnight!

After 45 days Bill was moved to Restorative Care this afternoon! A bed opened and all of the drs. had signed off on it, so off we went. He's a little confused and seems to think that since this looks more like a regular hospital room he will be able to get up. I told him he could not get up unless the nurses or therapists got him up, so they may have an interesting night.

He didn't sleep at all last night, and Lizzy said she had tried to call me. But, that was when my phone crashed, and the voicemail did not come through until tonight! He was wanting his phone so that he could talk to me and she wanted to know if his phone was there. She saw his white board in the bag I leave in the room and he wrote like crazy. Caleb stopped me on my way in this morning to show me what he had written. He had taken a picture of it. 

He wanted to know again what happened to him and how long he had been there and we both had a little cry. I'm not sure why he cried, if he was just overwhelmed by everything or just what, but I think he needed to do that. 

 Lizzy looked at his meds to see when his night meds had been given, since they were given early on Sunday night and he slept very well. She saw they were given a little later and that Dr. Williams has discontinued the Respiradol. That, along with the Seroquel were what worked. He had been given xanax twice, along with the Seroquel and some oxycodone, and nothing worked. Plus he only slept for a short time this morning. It was decided to double the dose of Seroquel. I don't know how much he was getting of it to begin with.

I was given a short tour of the floor this afternoon and met our social worker. I'll meet our nurse manager in the morning. I was very impressed with Pam, the social worker, along with Pam, the head nurse who was taking care of Bill today. I wasn't as impressed with the aide, and would like to kidnap any of the aides in transplant. She wasn't really happy when Bill asked for a bedpan. I was thrilled he asked for a bedpan! He could have just gone in the bed as he has been doing, so to feel the need to go was a major accomplishment!

I stayed a little longer tonight to try to get him settled in some for the night. I could tell that he was tired. I turned off his light and closed his blinds, after showing him that it was dark. He did keep the TV on. And, I let everyone know that he thought he could get up. Pam said that as soon as the Seroquel came up she would give it to him so that he could start winding down. She didn't want to leave it for the night nurse.

He's still in isolation, but I can leave my gown in the room and not have to change all the time. They mainly use the plastic gowns and there are a few of the nice cloth ones that keep you warm and don't make you sweat like the plastic ones. We'll see if they left me one in the morning.

So, tomorrow will start all of the evaluations by the therapists. Bill has asked several times how long he will be there and all I've told him is that it is up to him. It all depends on how hard he works to get weaned from the vent and get the trach reduced and then removed and then work on swallowing. He asked me to bring him a hamburger tonight. I think it is more just a memory about being in a regular hospital room and eating. He also wants his pajama pants, but for the near future, they will stay home.

So, that's it for today. I'm tired and really want to go to bed, but one of my favorite shows comes on at 9. I'm hoping to make it until it's over, but I don't know if that will happen. The cats, or should I say cat, was bad all night and I was up and down. Didn't really get to sleep until 2 and then up at 4:45 and out the door a little after 6. 

I'll let you know how tomorrow goes!

Today was a pretty good day until...more on that later.

Bill slept very well last night, so well they decided not to give him his bath until this morning. Dr. Williams decided after listening to him to put him back on the trach collar to see how he tolerated it, and he did great. His stats were low to begin with and I was afraid they wouldn't leave him on it. He also did a lot of coughing, but he got the stuff up and out so I did a lot of suctioning. He also still has the probe on his forehead and I'm not sure how well it was registering. But, his numbers came up in the afternoon and stayed in the mid to upper 90s.

After getting his bath, and then getting cleaned up after a bowel movement, Lizzy decided to try the chair and use the stander to get there instead of sliding him from the bed to the chair. But, just after they got him on the stander and closed the seat behind him, he said "I'm pooping" and sure enough he was. So, he sat, he stood, he sat, he stood, he got back to the bed and rolled one way and another and by then they figured he had had enough exercise and decided to leave him in bed but put it in chair position.

He did take the collar off at one time and I told him that was like the oxygen for his nose, it just goes in his throat right now. After that the only other time he reached for it was during a breathing treatment and he said it was cold.

They are going to put him back on the vent in CPAP mode tonight and then go back to the collar tomorrow.

We're still waiting for a bed and the first one available is his so hopefully it will be in the next couple of days.

And now for the later. I noticed when Bill's sister called this afternoon that the phone lit up and showed her picture but it didn't ring or vibrate, and I was holding it. I didn't think a lot about it because the nurse practitioner was there and talking. Then tonight on the way home Emily called after work and I wouldn't have known it if it hadn't shown up on the radio screen. And as we were talking I lost her. Of course I was in the middle of nowhere so thought that was it. I waited a bit and then tried to call her and it told me that I wasn't paired with the car. I looked at the phone, and it usually stays in my console since I have the hands free system and it was resetting itself. As soon as the lock screen came up it would reset again. So, I decided to head straight to the AT&T store. Now, this phone is only a little over a year old, but because it has a small crack in the corner of the screen, the guy said that it voided the warranty and since I didn't have insurance...He also said he couldn't find which app was not responding, yet he also didn't try really hard. But, by golly, I was due for an upgrade! But, I didn't want an upgrade, I wanted that phone fixed. I'm afraid I wasn't really nice to the guy, but he took it. He said all I had to pay today was the sales tax and the rest would be billed monthly on the phone bill. I told him I wanted to just buy it outright and he said I couldn't because they had an agreement with the manufacturer that they wouldn't sell them outright, but in 30 days I could pay it off. I told him I bought the last one outright and it was the same manufacturer! Anyway, I ended up with a new phone that I don't have the time, patience or inclination right now to set up! But, since it's the only way the hospital can contact me, it had to be done. I still have the old phone and I can still access all of the text messages and it's supposed to have backed everything up to the AT&T Cloud, so when the new one is fully charged I am going to try to download all of that. Just one more thing to deal with!

There's the update for today. Hopefully Bill behaved himself after I left and didn't pull his collar off. I guess I'll find out in the morning! Oh, by the way, feel much better today, so maybe just overtired.

I came home early today, just not feeling well. Already have my pjs on and could easily go to bed. I slept from 8 until 4:30 last night. Tonight I'll take some more cold medicine and see if I can knock this out.

When I got to the hospital, I found out just how bad Bill was. By the time they realized what he was doing, he had the trach cannula almost completely out of his throat! I thought they meant that he kept disconnecting it from the vent. He may have done that first because it now has an accordian end on it now. It will bend before it will disconnect. He had also been picking at the little thing they attach to his finger to measure his oxygen, so they put it on his forehead. When I went to get some lunch, in the time I was down there and bringing the food back up, he had taken it off! We made a deal, and shook hands on it, that he wouldn't take anything off or try to pull anything out or they would have to tie his hands again.

Dr. Munday did bronch him this morning and got a lot of really thick stuff out again. But when Rachael suctioned him later, she barely got anything, so he must have really gotten him clean.

Dr. Threlkeld said that the antibiotics are working, that the numbers he watches were much better. He said it's just a process that takes time.

Occupational therapy came in and Bill sat on the edge of the bed for 3 minutes, much of it with minimal support. He also helped get his legs over the side of the bed. When he was back in bed they did some shoulder exercises and some leg exercises, but by the time she got to the right leg he was almost asleep and didn't help as much.

He took a little snooze then and when he woke up I told him I was heading home early. I didn't tell him I didn't feel well, just that there were some things here at home to do. And there are, but I haven't felt like doing any of them. They were going to put him in his chair and I imagine they would position it so that they could watch him since I'm not there. He wasn't too keen on the idea, but I'm sure Rachael could get him to do it.

That's it for today. Since it is Sunday, there weren't as many drs. in and about. That's another reason I didn't feel too bad about leaving early. Rachael thinks they will have an open bed tomorrow in restorative care. I just know they said it should be this week. So I don't want to miss any days if they are going to move him.

Hopefully I'll feel better tomorrow. I'm not running any fever so I don't think I'm a danger to him. I can always put on a mask! For now I'm going to heat my chicken and dumplings from the other night and curl up on the couch. Goodnight!

Yesterday was a day of ups and downs. Bill was in a very good mood when I got there. I guess he and the night nurse Lauren had cooked up a scheme for him to tell his day nurse Becky that Lauren was his favorite nurse. But, when Lauren asked him who his favorite nurse was he pointed to Becky! He waved at all the nurses as they walked by his door and wanted to know all of their names.

For most of the morning he was in a good mood, talkative, asking questions. Then, he said that he couldn't breathe and started feeling, not bad, but not good. His heart rate went up and his oxygen saturation went down. Becky would suction and the secretions are so thick they hardly will flow through the tube and she was having to disconnect the vent and clean the trach cannula opening. Dr. Munday ordered a chest xray to see what it looked like and to see if he needed to bronch again.

And then, Bill's numbers all settled down, heart rate went back down, sats were 100% and he was talking and waving at nurses again and talking about getting out of the hospital and moving to the other room and wanting to know where his watch and rings were.

Apparently Dr. Munday decided not to bronch, unless it was done after I left at 5. Bill had been put in his chair and he didn't gripe the entire time, maybe the first 30 minutes, but after that he even tried to get out of it himself! It's a special chair they use for stroke patients and has a seat belt that I don't think he could get loose, but he was sure trying! He said again that he couldn't breathe and I've noticed that when he tries to cough he has a really hard time now. I don't know if it's due to the new trach that was placed Friday or the secretions being so thick or what. He didn't stay in the chair for the entire 2 hours, but he made it for more than an hour. I knew that Becky was in with her other patient, but as soon as she came out, they got him back to bed. And then he was all smiles again and winking.

I forgot to tell you yesterday that as soon as a bed opens in restorative care, he will move. Dr. Williams has decided that they won't try to wean him from the vent anymore in ICU but let that happen upstairs since that is one thing they specialize in. We, Bill and I, have talked about what all they will do up there and I'm going to see if I can get a little tour of it either today or tomorrow, just to get the layout and see for myself what it will be like for him.

I don't know if I'm trying to get sick, or just tired and my body is saying to slow down (probably a combination of both). I've got a headache today and feel like I'm getting a cold. No fever, although I woke up sweating this morning. I've already taken meds for it and I'm hoping that by hanging around the house for a bit longer they'll have time to kick in. 

I have to wait until tomorrow to call Tricare and the VA to see if those benefits will pay after the Medicare runs out. I don't know if the VA will, but from what I saw on the Tricare website, they may. Of course we'll have copays that we don't have now, but I can handle those. 

So, that's it. I'm going to have another cup of coffee before I start getting ready to go. At least the rain has finally stopped and it's not as cold as it has been. I will need to get gas before hitting the highway, but my coat has a hood if there's any wind blowing. Until tomorrow, or later today if something breaks open! 

Edit: Just got a call from the hospital that they had to restrain Bill, he kept trying to pull his trach out. He's OK, they just have to notify the family so they aren't surprised when they arrive. I guess I won't stick around here any longer so that I can get there and he and I will have a talk!

Yesterday did not start well. Bill spiked a fever of 101.5, just over the "it's probably nothing" line and he said he hurt all over. Dr. Threlkeld started antibiotics again, and told me he was bringing in the closer, not knowing I'm a baseball nut. I told him to get a good one and he immediately came back with Mariano Rivera. So, even though he is retired, he is one of the premier closing pitchers of the game. He started him back on Zerbaxa, which I think is just a broad spectrum, heavy duty antibiotic.

Bill got some Tylenol for the fever and Dr. Mullinax prescribed a couple of mild pain meds, stronger than Tylenol but not as strong as the Dilaudid. (And for you medical people out there, the med names may be spelled wrong, but I'm not looking them up). One of those was Toradol. He preferred the other one, and they never did tell me the name of that one, but it can lower blood pressure and Bill's was also staying very low. So, a one time dose of Toradol and off he went to sleep. He also got a big bottle of Albumin to help raise his pressure. It still stayed lower than it had been, but came up to a marginally acceptable range. His fever also came down to just above normal by afternoon.

In the early afternoon, they wanted to get him into his chair for a bit, and he played possum! If his numbers hadn't been so good on his monitor, his nurse would have gotten really concerned. She finally told him to open his eyes, and they popped open and he winked at her and laughed. He was able to help them get him to the edge of the bed and when they sat him up, he was much stronger sitting and holding himself up with his arms. He moved to the stander and didn't just flop down on the seat, but stood more while they made the pivot and then stood while they got him ready to sit back in the chair. He did really well.

Becky, his nurse, noticed that his trach/vent sounded a little strange so she called respiratory and they decided that the entire trach, not just the inner cannula, the entire track plus collar, needed changed. But, the replacements in the room were a little different, even though the package said they were the same. It would not go all the way in. So, the therapy supervisor and our buddy Mike came in and then sent runners to look for the right one. Each of the runners came back with one so now he has a spare in the room. They got it changed out and the supervisor kept saying he shouldn't be talking with it. He's actually talking better with the replacement than he was before.

When I left all of his numbers were good and he was in a good mood, still flirting with Becky. She said she was going to give him his sleeping meds early, before her shift ended, to see if that would help get him regulated. She was hoping that even if he stayed awake for a few hours after getting them, he would go to sleep earlier and not sleep as late into the morning. I hope it works!

I had so many offers of food yesterday, I could have eaten for a week if I had accepted them all! I know it's not because they think I need meat on my bones, you can tell that's not a problem! But, it was Brianna's family birthday dinner and I didn't want to deal with all the people who would be there, so she and David brought me chicken and dumplinings. Mistie was making baked chicken zita alfredo and offered to bring me some and Joe and Barb said they had chili and pasta and meatballs if I wanted some of that! Bri brought 2 big containers so I'll have some again tonight. They were really good, thanks Vicki! I was also blessed by some friends yesterday with a gift, thanks Ruth and Richard.

Yesterday morning was a hard one for me. I told someone before that when Bill has a good day I have a good day and when he doesn't, I don't. I don't respond well to compassion in these circumstances. Well meaning words and hugs usually bring tears, and they did yesterday. One nurse who has had Bill even gowned up just to come in and give me a hug. Just thinking about it brings tears again. I know part of it is just being tired, and today I'm really still tired. I slept well for the most part, but I didn't want to get up and I'm still tired. I think I'm going to leave a little later this morning since it's Saturday. The traffic shouldn't be as bad and I should still get a good parking space. But, I'm going to drink an extra cup of coffee instead of rushing around after finishing this. And since the internet was useless at the hospital yesterday, I didn't get to do any of my research on attorneys and benefits that I wanted to do so I need to spend a little time doing that this morning.

It's cold and rainy here, but we missed the ice and snow that those farther north received.  I hope everyone stays warm and dry if that's where you are and nice and cool if you're lucky enought to be in a milder place. See you tomorrow!

Yesterday started out as badly as the day before ended. When I got to the hospital, Bill was still on full vent, arms were restrained and he had the big boots on his feet to prevent clubbing. Now, he hadn't had those on for at least 3 weeks. I could understand the arm restraints since they said he was reaching for his vent, but I think, watching him, he was actually trying to scratch his nose. I took the one off his right arm and he immediately went to his nose to scratch. He also pushed his glasses up. Why they don't remove them when he goes to sleep is beyond me! So, except for the sedation aspect, we were back to where he was 6 weeks ago.

Dr. Threlkeld was really surprised to see him on the vent and said he would find out why. If he did, he didn't come in and tell me. We also got a different nurse as soon as he was given his morning meds. This one came from regular cardiac ICU and you could tell she was used to people who couldn't move. She was also one of those that monitored mainly from the nurses station. She was nice enough, but rather rough with Bill at times. 

The chaplain I've been talking to, Joseph, came by and asked how things were, and I lost it. I told him I was only OK and Bill was not and no-one would tell me what was going on. He held my hand and we prayed and he said he would make sure I knew what was happening and why. A little while later Cindy, from cardiology came in and, all she said was that he had been doing so good and this was just a little setback. But, Dr. Edwards had finally agreed that he could be moved to Restorative Care since one of their specialities, besides intense therapy, is weaning from vents. They were just waiting for a bed. Not a lot of answers, and not what I needed to know, but a start. 

When Dr. Williams finally came in, he listened to Bill, nodded that he sounded really good finally and changed the vent to CPAP again. And that's it. I still don't know why the sudden decision to bronch or vent. Was it on a nurse's evaluation, had this nurse cared for him before, what was included in report and rounds, that is also open to a nurses' interpretation? During rounds one of the nurse managers asked why he was still on Foley catheter and I was the only one who knew, so that didn't get passed in report.

Anyway, when I left yesterday afternoon, Bill was sleeping very deeply but he was doing well. Hopefully he didn't wake up and panic that I wasn't there. I tried to wake him to tell him I was leaving, but he didn't budge.

He still wants to drink so badly, and now he's added eating to his actions. He even wants Diet Coke because that what I was drinking, and he hates Diet Coke. Maybe in a day or two he'll be able to start working with the speech therapist again on swallowing.

Now, for the part that really was the last straw. Another of the nurse managers came in Weds. afternoon and said that he had just been notified that in 3 days, which is now tomorrow, Bill's Medicare Part A would run out for this benefit period. I didn't know that it ever ran out and that the only way for our other insurance to keep paying was to agree to use the Reserve Lifetime 60 days, and you only get to do that once. So, what choice did I have except to sign the paperwork. Now, if Bill had been able to stay out of the hospital for a consecutive 60 days in between hospitalizations, a new benefit period would have started. But since he had been in a part of every month since June, that obviously didn't occur. But, why didn't they give me this information 6 weeks ago when he was hospitalized? People from every department round every morning, surely someone from financial was aware of this. Anyway, that was just the last straw to a very bad day. I have since been able to think some things through. There is another way to avoid using the reserve days and that is if there is a medigap policay. Unfortunately, Tricare and VA benefits don't qualify as medigap policies. I could also have him transferred to another skilled nursing facility, and that isn't going to happen for several reasons, or he could be discharged to home for 60 days, and that's out of the question. I've got to research with our other benefits to see if when Medicare is exhausted they will pick up, even though we will then have co-pays. I'm also requesting all of his records from the skilled nursing center and the local ER and, even though I hate conflict and being the bad guy, I'm going to consult an attorney about getting the nursing center to pay for this hospitalization. In my mind, and others, he was a patient able to be discharged from hospital, to the nursing center for rehab only, and in 2 1/2 days, he is comatose and on life support. So, there's got to be some answers there somewhere. And before anyone thinks that I'm just gold-digging, I don't care if we see a dime. I just want the hospital paid and the attorney fees paid. Whether we get anything out of it or not, I don't care. So, thoughts on this would be appreciated, both pro and con.

I don't know if I'm coming home from the hospital tonight. It depends on the weather. I'm preparing to stay, but would really like to come home, especially if it's just rain and I'm seeing more and more reports that it will just be rain in our area. I've also been invited to Brianna's 20th birthday dinner at her other grandparents. Kenna is really pushing for me to be there for a hot home-cooked meal of chicken and dumplings, mashed potatoes, macaroni and cheese and hot dogs and sauerkraut (which I haven't had in ages). The downside is there will be a lot of people there and I don't know if I'm up to sympathy words, hugs and looks. And I know they will be sincere, but niceness causes more emotional responses than if someone were mean or didn't say anything at all. So, I'm undecided.

And, now it's time to get ready to go and all I really want to do is go back to bed. Hopefully the internet at the hospital will work today, couldn't get online at all yesterday. I really need to do the research on insurance and look up attorneys that specialize in things like this. So, thoughts if you have them, pro and con. And for those I still haven't talked to, I'm trying...I really am, and I will talke before long.