When I got to the unit yesterday, his night nurse said that he had slept all night and was in a good mood when he was awake. She said she gave him his Seroquel at 8 and that when he woke up, he probably wouldn't go back to sleep. The respiratory therapist said that after I left he was good as gold...maybe I should just stay away!

Anyway, he woke up shortly after I got to the room and he was in a good mood. And he had been shaved and his hair washed! So he must have gotten another bath, or Caleb had come up from step-down. I had stopped down there for ice and water on my way home Wednesday and talked to Caleb and Brian for a bit. Caleb has shaved him before and knows he doesn't like a beard and I said that I had wondered how I could sneak him up there to shave him. And, the next morning, he's been shaved! I didn't see Caleb yesterday to ask and Bill couldn't remember who had done it.

He made 18 hours on CPAP and they were going to try for 20 yesterday. If he made the 20, he would just now be put back onto the vent in SIMV mode. He did try to call the nurse to have them come and turn off the percussions of his bed, but I told him they were on a timer and couldn't be turned off. Only a little lie, the bed is on a timer, but it can be stopped. 

Dr. Mehrotra, who really needs to watch when he crosses the street instead of his phone, wants him on trach collar fast, but Stephanie is still being very cautious. I don't know if he will override her or not. Since Bill is not getting any antibiotics now and is only getting his breathing treatments and percussions, he really doesn't need to be in the hospital any longer. One question he asked was if we have a vent at home. When I told him no, he said then that his goal was to get him off the vent as soon as possible. So that tells me he wants to speed things up.

Of course, Bill is still weak as a kitten so he will go to skilled nursing after this for more intense rehab. And we still have to get the swallow study done and Lisa said she will get it scheduled as soon as he is on trach collar. So, he won't be discharged any time soon.

Bill did cooperate with therapy yesterday. He stood and pivoted with Chris to his chair and then he was able to kind of re-situate himself as he was sitting. His nurse at one point looked at his position and said that he must sit like that most of the time. I looked and sure enough, it was how he would sit at home. He also cooperated with OT, although the impression I got was that he thought it was too simple and childish to do what he was doing. He was again moving the rings from side to side, but she raised the arch and she brought it stiffer clothespins. He did them all quickly but I could tell that he thought it was dumb. That's his favorite word right now, everything is dumbI

I left early yesterday, not because I needed to, but because I wanted to! I did need to go to Walmart and the respiratory therapist told me I needed to go home before dark! It was dark by the time I got home, but I got into town before dark. I went to bed at 8, woke up at 9:21 thinking I had been sleeping for hours, up at 11 to the bathroom and didn't wake up again until 4:15. I haven't slept that long in quite a while!

I ordered Bill a pair of hearing aids yesterday. They won't be as good as ones fitted by an audiologist, but maybe they will at least let him turn down the volume on the TV. He has it has high as it will go and he still tries to turn it up. They will be in tomorrow and I will charge them overnight and then we will see Sunday how they work. 

That's it for yesterday. At least the evil Bill was gone. When I flipped his sign over he started laughing and said he was going to go to sleep too! They hadn't put him back to bed before I left and I'm hoping they removed the sling when they did. At least there were sheets on the bed so maybe...we'll see in a couple of hours!

There's not much I can say about yesterday except that Bill was a total ass! He started as soon as he was awake and was belligerent and mean and rude all day. He refused to participate in therapy, refused to get out of bed, refused a bath (and he hadn't had more than a quick wash-up since Saturday) and slapped people's hands away when they were only doing their jobs. You could tell by looking at him that he was just mad. He also told me was going to leave, just get out of bed and walk out, so I made sure they had his bed alarm turned on. And, I hadn't made it halfway down the hall before he had pushed his call button for the nurse.

Medically things went pretty well. He had spent 16 hours on CPAP and the goal yesterday was 18-20. I don't know if he made that because he would start breathing really fast when he was acting out. If he didn't and had to go back to vent mode sooner, how far back they will go to start over. But, when he wasn't in a state, his sats were all good.

They are going to take his PICC line out. It has been in place since November 15 and it is not being used for anything now except to draw blood, if that. That could be the only reason it would stay in, but since he's not as sick as he was, they may be able to get a good vein now for blood draws.

He did get a bath after all yesterday. He needed cleaned from a bowel movement (he refuses to use a bedpan and they won't let him use a bedside commode yet) so they snuck in a bath. He at least didn't fight them like he did the other day. I had them put his bed in chair position since he refused to get into his chair during PT. The other therapies didn't come in, that was the only one. He wasn't happy about it but he knew I was at the end of my tolerance level for that kind of behavior.

And, before any excuses are made, I know he's been through hell and back since November with people telling him what to do. I know he's had horrible things done to him and that he's been stuck in a bed in a room for 2 1/2 months. I know this, but it also doesn't give him a free pass to be mean to people, and that's just what he was, mean. I don't know if we're dealing with some roid rage again since he's on such a high dose of prednisone, but this just seems different. He said he slept all night and the night nurse reported that he did sleep well and when he was awake he was in a good mood. So, I don't know.

I do know that I was totally exhausted when I got home last night. I had had a headache all day (sinuses) and still have it today. But this one is just a stress headache. I didn't sleep well and of all the nights he could have chosen, Mouse had to choose last night to nuzzle in the middle of the night. So I had a 15 pound cat who wanted to be right under my chin at 1 am. Kitty is also following me around whenever I leave the room and is also very clingy. 

So, this one is not upbeat and happy. I suppose that progress was made yesterday in the number of hours he was on CPAP, but it was not pleasant for anyone. Hopefully it will be a better day today.

Yesterday started out with a bang, but before I get into that, let me finish up Monday. Dr. Yarnanov came in after I posted and said that they are mainly just monitoring his Prograf levels, that the lung doctors are the ones "driving the show". Somehow thhe translation from Russian got a little confused. He was also in his chair when I left and ended up doing 14 1/2 hours on CPAP!

And now, for yesterday. When I walked into Bill's room, his bed was raised, there were no linens on it, and he was just laying in the canvas sling they use to move him from the chair back to the bed. This is heavy, scratchy canvas! I knew exactly what had happened, and I was very put out with the staff. I told Emily later that I was so mad I was shaking! When Chris got Bill up for PT, he stripped the bed because there was some spilled formula where the tubing had dripped some. Not a big spot, but it had been there from the day before. (I think I eluded to the care being lax on the week-end). Same sheets as had been on. Chris does put the sling in the chair, covered with a protective pad in case of accidents and that way the nurses can move the patient back to bed since he's usually gone by the time they want to go back to bed.

Anyway, when I left Monday night, I told his nurse and PCA that he was ready to go back to bed and they said they were on their way down to his room (he's in the last one of the hall). So, I know what they did. They just put him back to bed, without making it up first. 

I immediately called the number on the board for the unit manager and left her a voicemail since it was only a little after 7:30 and then I waited. It was very interesting to watch. The respiratory tech came in to switch him to CPAP, the PCA for the day came in and did vitals, the nurse came in to give meds, and Speech Therapy came in for therapy and NONE of them said anything! Lisa, the therapist did lower the bed after she was done, but no-one else said anything!

Leslie, the manager,and Pam, one of the supervising nurses came down and I met them at the door and they were appalled! They were really concerned for what that fabric would do to fragile skin after a long period of time. I did not name any names of staff, but I did question why the night shift didn't do something about it. They said that it would be taken care of and within 10 minutes, Kiana the PCA we've had before and an older nurse I hadn't seen before, came in. The nurse tried to tell me that they don't put sheets on "those kinds of beds" because extra layers cause skin breakdowns easier. If you remember, they moved one of the beds that are used in ICU in so that the percussion function could be used. I told her that he had been there 3 weeks and there had been a sheet on the bed every single day and he did not stay on that sling all the time. So, grudgingly, they got the bed made and Bill repositioned and the sling removed. I don't think that nurse likes me very much. I also noticed a slight change in attitude with Kiana and Erin, the nurse, but you know what? I'm not there to win a popularity contest! "He's my husband, that's my job!" is my only concern! I was still just as nice and polite to them, thanking them when they did something and just being chatty as before. 

I did make sure that Bill was put back into his chair before I left (lesson learned) and I heard Erin ask Kiana if they were going to leave the sling and Kiana said no. She, at least Kiana, got the message!

I think I've said before, and those of you who know me know how much I hate confrontation, but I'm very proud of myself for the way I handled this. Usually when I get upset, I cry and then get more angry at myself for crying. You will be happy to know that there wasn't a single tear, I explained the situation very clearly and not meekly, but confidently. I doubt this happens again. As to the nurse with the attitude, she probably won't want Bill as a patient. I don't think any of them are used to family being there as much as I am, so some of their autonomy is taken away.

Bill did well moving from the bed to the chair again with Chris and then he did some pedaling exercises, 3 1 minute sessions. I didn't get up to look at this numbers, but there were no alarms and Chris said he did well, both with numbers and the exercise.

Stephanie did clarify the 48 hours, it is 48 continuous hours. They were just going to let him go as long as possible yesterday, so it will be interesting to see how long he made it. And Lisa said that as soon as they get to trach collar, she'll try a couple of more things and get the swallow study scheduled. Hopefully he'll be off by the end of the week.

So, that was our very exciting day. And now I must get ready for this exciting day...another day of driving in the rain. I asked God why I was being tested so much with driivng in rain and fog. His answer was more rain, so I guess I haven't passed the test yet. At least I can be thankful it's not as severe as Job's was!

Have a great day!

Decided to go ahead and update now instead of waiting until tonight or tomorrow morning. He's been in CPAP since about 8:30 this morning and he's done fine. His oxygen has also been lowered to 45%. This trial is for a minimum o of 8 hours and he can go up to 12 hours if he wants and is still doing well. Stephanie said that when he can go 2 days they will go to trach collar. She didn't say if she meant 48 continues hours or 2 12 hour sessions back to back. She's trying to fast track him since she knows how much he wants to talk. She did say the was bo change in his xray so it had not worsened. 

He slept most of the morning. He was given his Seroquel at 8 but he was given some dilaudid at midnight. He says he didn't ask for anything for pain and said he slept all night. The nurse said she was just told that he got a little agitated then so it's a mystery.

He's been in his chair for nearly 2 hours now and again he sat on the edge of the bed first and then stood and pivoted to the chair. He did drop to 87 but recovered fast. He also worked with OT, moving the rings again and then using big clothes pins. Without her telling him he sorted them by color. It eas harder for him to get them off than to pin them.

They had to reposition his inner tube. It keeps coming ot for some reason. But the got it back in and he quit laboring to breathe. He wasn't actually having trouble breathing he just thought and felt like he couldn't breathe.

He hasn't had speech yet but she's peeked in a couple of times so it may yet happen. Right now he's watching ID murders and is nice and calm. 

So not a long post but another one with progress. 

There really isn't much to tell from yesterday. Bill did fine Saturday afternoon with his CPAP test and yesterday's test went great. He was breathing on his own, with the vent only keeping his airway open like a CPAP machine does, for 6 hours! His sats stayed in the upper 90s/100 most of the time. I don't know what the plan is for today, if they will try a trach collar and then put him on CPAP tonight or just what they will do. I guess I'll find out when I get there.

He did sound junky at times and had to be suctioned quite a bit before I got there. Stephanie could see where he was able to cough the secretions to and said they were white and frothy. She did order an xray for this morning so we'll know more after that.

His Prograf level, the level of one of his anti-rejection meds, was a little low yesterday at 4, but Dr. Yaranov said that's a good level for Bill. It gives enough of an immune system to fight these infections, yet not so much of one that it brings on rejection. And, although rejection can happen at any time, it is more likely during the period right after transplant and for the first couple of years. Bill is far enough out from his that it is unlikely, but could still happen.

We just lazed around and watched movies all day yesterday. He hadn't remembered what the signs were for, probably forgot it was on the wall. So, when I left yesterday I turned it to the sleeping face and told him I was going home to rest and that he could take a nap if he wanted. He apparently did because he turned off the TV. I reminded him that when "my face" was showing I was in the hospital.

Other than that, it was a very quiet day with no problems.

I'm not looking forward to the drive this morning. The cats decided to have a little tiff on the bed, on top of me, about 3 this morning and my usually response is to just kick my legs and kick them off the bed. I did the usual response and now my hip is screaming at me. I have already taken a pain pill and it is starting to work. But, it had been doing so well I hadn't really had to use the cane. I've carried it with me and use it outside since I walk up and down hills, but most of the time can get by without it. I think, though, that today will be a cane day.

That's it from here. I'll of course let you know how today goes!

The Seroquel was given early on Friday night and Bill slept all night and part of the morning. Brittany met me in the hallway, usually not a good sign, and told me he did fine and was awake when she first went in at 7. He was awake when I walked in the room, but went back to sleep shortly after that and was sleeping really good all morning.

Totally out of character, he became very combative when it came time for his bath. The PCAs know that he gets cold easily, so they tag team him and keep him covered as much as possible and the bath is over in 10 minutes. But, I actually had to hold his arms to keep him from hitting them. When it was all said and done, he became his usual easy-going self. I hope that it was just because he had been in a deep sleep. They only bathe every other day, so today shouldn't be a problem. Of course they do have to clean him after a bowel movement, but he doesn't fight them on that.

He was supposed to be put on CPAP for 2-4 hours yesterday but it hadn't been done before I left. I asked the respiratory tech about it and she had gotten busy and forgotten! But, no big deal, except that I wasn't going to be there and couldn't stay. My lunch did not agree with me and I was tired of running down the hall to the bathroom. I was totally miserable so needed to just come home. I also think I was just tired and needed to  go to bed early. So, she was going to switch him over after his breathing treatment.

I made these signs for Bill, to maybe help orient him when I wasn't there or when he had been sleeping and I wasn't in the room. This was the suggestion my sister made that they had used in the nursing home. Hopefully I can get them inserted here. The one of "me" shows when I am there. It is supposed to tell him that I am in the hospital, even if I'm not in the room. The other one, on the flip side in the sleeve, lets him know that I've gone home to get some rest. We tried it yesterday so we'll see if it worked today! I'm also adding a picture of the man himself. Considering all he's been through, he doesn't look too bad, in my opinion!

I wanted to get this post done early so tablet it is. Bill threw a tantrum after I left last night and was throwing anything he could get his hands on. Apparently the Ativan did not work. He was awake and in a good mood when I got here but he had sent his pca on a mission to find me! He had been writing lots of notes including telling everyone to get out of his room! So we had a talk about that. 

Hematologist came in early and said that his blood numbers were all good and he hoped he got off the vent soon so he could talk again. 

I talked to the Joint Commission nurse and she was more impressed on what I knew about Bill's condition than what I thought about the facility. I talked to the nurse manager about meds and as soon as we were finished she sent his nurse in. By this time Bill had gone back to sleep and... yep, got his Seroquel at 9:30. She was going to pt a note in that he does better when he gets it at 8 and was going to let pharmacy know to send it up early and to make sure his night nurse knew to give it early. 

His antibiotics are going to be stopped. His last sputum  sample showed Pseudomonas but no white blood cells so it is dormant again. They are just going to continue to monitor him for now. 

The vent has been turned back to 4, skipping 6 altogether and he's done fine. PT came in and instead of using the sling to move him, Chris had him sit on the edge of the bed and then partially stand and pivot to the chair. He was really impressed and his sats only dropped to 88 which is his minimum number, and he recovered quickly. He's been up for almost 2 hours now. 

Speech came in and worked on swallowing again and he did well. It's still hard because of the longer tube of the inner trach. But it will get easier. 

So that's today's update. I'm going to have them put him back to bed when I need to leave and hope that he has a good evening. I'll. Let you know tomorrow!

Apparently my early exit on Wednesday caused a major anxiety attack for Bill later in the evening and everyone again panicked and...back on full vent. An entire week has again been lost. 

Even though he has lost all of that time, one of the doctors even questioned the decision made by the pulmonary nurse, he had a good day yesterday. And the vent was turned down and put into another mode. This mode senses when Bill breathes and doesn't over breathe as soon as he exhales. It can also tell if he hasn't breathed when he should have and will initiate a breath. Hopefully it will get turned down today, unless Dr. Edwards overrode the decision last night. These doctors are wanting him off the vent as much as I am, knowing that he will become truly dependent on it if he is not weaned a little faster. Of course part of it could be that there have been inspectors in the hospital and everyone is super aware and jumping. Goals were added to his white board that hadn't been there before and I was told they may ask to come in and ask me some questions.

Bill also has a standing order for Ativan, which as most of you know is an anti-anxiety drug. Why they didn't give that is also a mystery. I suppose the only way to really know is for me to stay there 24/7 and even though I could, it wouldn't do me any good. That is one reason I do come home, that's when I recharge.

Bill was awake and in a good mood when I got there. He had declined his bath after I left Wednesday so he was first on the list. He was very compliant and let them do the bath with no complaints. I talked to his nurse about the Ativan and she thought I wanted him to have it then, but I told her only after I left. She was agreeable with that, and when I told her I was leaving, she said that she would give it to him immediately. She was already doing his blood sugar check so she was at his room.

He worked really hard with occupational therapy doing arm exercises. He did them so well and so fast she started repeating them so that he got his full time of therapy. PT came late in the day and he said he wanted to just stay in bed. I told Chris that the bed had been in chair position for 3 hours, upright from when Ellen was working with him and he was OK with that, since he had been sitting up.

The therapists were both a little disappointed too that he was still on the vent since yesterday was CPAP and trach collar day. It is easier to move him that way. So, maybe by the end of the week-end he'll have caught up.

He stayed awake all day, not even a little catnap. So, he must have finally slept all of the Seroquel out of his system. Hopefully he got it early enough last night. That's another drawback of not being there when the shift changes, I don't get to talk to the night staff.

So, that's it for yesterday. A better day for Bill as far as being awake and cooperative, but the setback of the vent was disappointing. We'll see how today goes!

Today was a short day for me. No, nothing is wrong, I just came home early.

Bill was still sleeping when I got there this morning, roused up long enough to get his blood pressure taken and a breathing treatment started and then went right back to sleep. He even slept completely through an exam by Janet for Dr. Threlkeld.

Stephanie came in and said that the trach would be changed this morning during rounds and ordered the vent turned down to 4! So, he made it to the magic number! A bit later she was back with Dr. Henderson and they got the trach changed, easy as anything...for them. Because the tube is longer it kept triggering Bill's gag reflex and even suctioning didn't help. It was alarming enough for me and the respiratory tech, who is new and was on her own for the first time today or all days, that she went to get a supervisor. He kept coughing up a little bloody mucus from around the trach collar. It's a good thing I don't mind gloving up, so I got some gauze and started trying to clean it up a little. I didn't want it to just lay on his chest. He's already got an area that is quite sore from secretions that weren't wiped up. They are supposed to keep an absorbent pad under the collar, but it was gone this morning.

The supervisor came in and he had started to calm down some and was going back to sleep. But, he was doing great at 4, with his sats at 100% most of the time. I was trying to figure out why he has wanted to sleep so much the last 2 days and I finally thought to see what time they were giving him his Seroquel. It's ordered for 9 and last night it was given at 11! So of course it hadn't gotten out of his system. I told his nurse we had to play with the timing last year and she was going to tell his night nurse to give it by 8. That may also be too late, but we won't know until tomorrow.

Since he was sleeping so much, the next time he roused up, around 1:30, I asked if he minded if I came home to get some things done. He said that it was OK, if they would just leave him alone. He said that his throat hurt and he just wanted to sleep, although with the longer tube he can't actually talk anymore. So, I told his nurse that I was leaving. I didn't tell Bill that he was still going to get his bath, but hopefully they got it done quickly.

I didn't do much after I got home. I did stop and get a few groceries and then came home and fed the cats and me and got the trash out to the curb. Then, to think of something other than medical stuff, I did our taxes! Or, at least as much of them that I could do. I still need a couple of forms to come in or be ready for download, and one of our forms isn't released yet but will be Friday. But, the bulk of them are done. I'm going to just kick back tonight and watch as much of the "Chicago" shows as I can stay awake for. 

Weather could be a factor in the morning. It's supposed to rain, but it may start as sleet or snow. So the commute could be fun. I won't need to stop anywhere in the morning so I can just hit the highway.

That's it for today. Hopefully he'll go to CPAP tomorrow, if not tonight, and maybe he'll be off the vent by the week-end! I'll let you know!

Again, we're getting into days that may seem to be nothing, but things do happen.

Bill slept most of yesterday again, but he did apparently sleep at night too. Maybe he just isn't resting. When I got to his room, it was pretty much in shambles! It was also dangerous for Bill. His bed was raised and in a locked position and all the rails were up. Using all 4 rails is illegal, it is considered to be restraint. I don't mind that the rails were up, we went through that in Florida in the nursing home when I begged for rails to be put on his bed, but to have the bed up so high, had Bill been so inclined to get out of bed, he would have broken several bones! His tray table was pushed clear across the room and his night stand was by the bed. That was explained by his nurse, who put it there, when he asked to call me. She said she just couldn't tell him no. But, the rest is a mystery to all, including the nurse. She said there was nothing in report that explained it and the only thing we could think of, since one of his urinals was gone, was that he had had a bowel movement and the PCA had cleaned him and then didn't lower the bed.

The vent was turned down to 6 and he was doing fine with his sats, staying mostly in the high 90s and hitting 100% when he was sleeping. The plan was to replace the inner trach collar yesterday, but as of 4:30 when I left it still hadn't been done and the respiratory tech thought that it would be done today now. Once that is done, he won't be able to talk, they hope. It wouldn't surprise me if he didn't find a way.

When they can turn the vent to 4, which should be today, they will then put it in CPAP mode, where he is doing all the breathing but the machine is keeping the airway open. And after that, he will come off the vent completely and go back to the trach collar and regular oxygen. So, that led me to wonder, if that's going to happen in the next couple of days, why do the trach replacement? Seems like that just puts him through some trauma that may not need to happen. But, then it could take longer to get him off, and in this case, I'm not a dr. and have to defer to them.

He did both physical and occupational therapy. I saw the speech therapist a couple of times in the hall, looking toward the room, but she didn't come in. I do know that the x-ray did show a new pneumonia in the lower right lobe so I'm wondering if he is aspirating the ice chips some, which is why she didn't come in. He didn't want to do the OT since she came late in the day and I had to get tough with him. I told him if he ever wanted to come home with me, he had to do it, even if he didn't feel like it. So he grudgingly said he would try. She had him move plastic rings from one side of an arch to the other and back, alternating arms. He did fine with that and actually started trying to cheat by moving them in 2s and 3s! Then he was able to get to bed, which is what he wanted all along. But by that time he had been up almost 4 hours.

I left after that and didn't get any calls. And now it's time for me to get dressed and hit the road. We'll see if he can talk or not when I get there. Later, everybody!

It was a pretty normal day today, but things did happen. The vent is now set on 8. Bill told me several times it was hard to breathe. I had to remind him that he had to do more breathing since the machine was doing as much. His trach is also leaking around the inner cannula, which allows air to escape and it does affect his breathing. That's also what lets him talk.

He saw Occupational Therapy today and she's going to work more on his shoulders and arms until he's off the vent and able to sit on the side of the bed easier. He also saw Speech and did a lot of swallowing exercises and got a few ice chips. He did not see Physical Therapy and didn't get into his chair today. Part of that is my fault. I wasn't feeling up to par and didn't push it with his nurse. And of course he was perfectly content to lay in bed and watch Andy Griffith!

They are continuing the antibiotics for a few more days. Dr. Edwards is apparently concerned that he still has so many secretions and he thinks he might need bronched again. But, the lung doctors don't seem to think so, or at least they haven't said. Stephanie has ordered a chest xray for tomorrow morning. She also had them put the bed in percussion mode today, so maybe they are hearing something. She said they still hadn't decided on replacing the inner cannula. And, I had the name of the doctor wrong. It's Dr. Henderson.

The dietician from ICU came by and is going to start covering Restorative Care because the usual one is retiring at the end of the week. And she didn't say anything about it when she came in last week! But, Mary was pleased with how he's doing on this formula. She said his potassium has come down and he may be able to get back to the Glucerna before long. I got the impression that even though the potassium is within normal range, it's on the high side and they would still like it a little lower. He has gained 5 pounds, or there is at least a 5 pound difference from when they weighed him in the bed when he got to the unit and when they weighed him in the sling yesterday. It could just be that there is a difference in the scale.

I got a surprise tonight when my phone rang and it showed the hospital number, but it was Bill! I don't know who dialed for him, or what phone he used. He can't reach the room phone and I don't think he could make a long distance call on it, but who knows. I guess I'll find out in the morning. He was surprising clear on the phone but he did say it was hard to talk so he needed to get off to breathe! So, I guess I'll take his cell phone back in the next few days.

Going to bed early last night didn't do me any good. I woke up every 1 1/2 hours so was still tired when I got up this morning. It is also really cold, only in the 20s and I was cold all day, even though I had on a heavy sweater and the isolation gown. I guess I was just feeling the cold air from the window at the hospital. And, my stomach rebelled with breakfast and everything else I tried to eat today. I was able to eat some dinner without any problems (so far). Emily has also had stomach issues that are about the same all day so maybe there is a little something going around.

That's about it for tonight. I wonder if I would sleep if I went to bed now. I'm sitting here rocking while I'm typing and fighting to keep my eyes open. Goodnight, whenever I go!

Bill was wide awake and rearing to go when I got to the hospital this morning. I stayed home an extra hour, the sun was shining, the traffic was light and it was actually a pleasant drive.

I asked Laura if he slept last night and she said his night nurse told her he slept like a baby so the Seroquel worked! Hopefully it will work again tonight.

His vent was set on 10 and still at 50% on oxygen. Bill told me that he couldn't breathe when I got there so I told him that he had to do more breathing because the machine wasn't breathing for him as much and he said OK and didn't say anymore about it. There was another setting, the PEEP which has something to do with keeping the lower lobes of the lungs more inflated when he exhales, that was set on 7 and Stephanie increased it to 10. She did say that she was going to consult with Dr. Hendricks(x) who has hospital rotation this week about the inner trach and the possibility of needing to use the longer tube. He's still leaking air which somewhat defeats the purpose of the vent.

His blood sugar was perfectly normal this morning and at noon, but high this afternoon. Laura said that seems to be a trend with him. His blood pressure is also much higher in the afternoons. I asked her about holding his mididrine which is the med to keep his pressure above 100. She said she hadn't given him any since yesterday morning, so maybe they have stopped it unless his pressure drops again.

He sat in his chair for 2 hours today and we watched old movies all day. He did get back into bed when it was time for me to leave. I gave him the standard orders and he just answered with no fun again. Hopefully there will be no shenanigans tonight! He told me to kiss the kitties and told me he loved me and off I went.

That's how the day went today. I've done some catch up reading and cat cuddling. There's nothing interesting on TV tonight and I've gone silent as far as the phone goes. Unless caller ID shows the hospital, I'm not answering calls. I've enjoyed the quiet of the house. And now, I'm calling it a day, or a night, however you want to put it. Goodnight!

Yesterday was a pretty quiet day, mainly because Bill slept almost all day. Yes, he was up almost all night again, very agitated. The Ativan that was ordered didn't help much and seemed to have the opposite effect according to his nurse.

The nurse he had during the day yesterday was Laura, one of the ones I was hoping for. When she told me that he had been awake all night, I told her I had my notes from last year in my bag and I would see what he was given last year when he did this same thing. So, it didn't take long to find what I was looking for (helps to have things dated) and as I was telling her what cocktail he was given, she said that she remembers discussing this with me then! Stephanie, the lung nurse, was still on the floor, so Laura told her what he had been given. They neither one could access the old records to see the dosages, so they were going to consult with pharmacy for their records. All I know is that he was given a combination of Xanax, Seroquel, and Respiradol. They tried taking away the Respiradol and double the Seroquel and the report for that, according to my notes, made him more agitated. So, Stephanie ordered the Seroquel with Melatonin on request. The Melatonin is actually the Respiradol in generic form, I think. We also know from last year, and Laura remembers this too, is that he had to be given them shortly after I left so that by bedtime, they were already in his system and working. When I left yesterday I told her to use her discretion as far as the melatonin went because Bill wouldn't ask for it and would probably decline something to help him sleep if they offered it that way. She told me she had me covered and to go home and get some rest. She's also on today so we'll see what happens.

Walt was the respiratory tech, and when I told him about the way they were moving Bill, when he had been taking steps before and standing, he did explain that as long as he was on the vent, it was just safer to move him with the sling. And that does make some sense. He did try to stop the trach from leaking and it worked for a little bit. There is a little bulb attached to the inner collar that can be filled with air. This inflates/deflates the inner collar to allow sound or not. On the vent it is supposed to be inflated so that all of the air goes into the lungs, off the vent it has to be deflated or Bill will suffocate because it would close off his airway from the trach site. Anyway, the inner tube has shifted, which allows the collar to deflate. To add air they simply take an empty syringe and push air into it until it is firm. Walt then taped the syringe to the bulb hoping that would make a difference. And it did for a bit. But every time Bill woke up, he would start talking and the inner tube would shift and it would deflate. I imagine tomorrow they will change the inner collar again and use the longer tube so that this won't happen. He did turn the vent down, and we both told Bill that he had to work harder to breathe because the machine wasn't working as hard and he seemed to understand that. When I left his oxygen concentration was set at 50% and the respirations were set at 12, hoping to go to 10. Stephanie made the comment that there was a problem with his oxygen in the night but he was stable now, but she didn't elaborate. I wonder if it had been set at 40%, which seems to be a magic number for medical personnel because they kept telling me in ICU that if he could get to 40% then he could go to step-down/Restorative Care/home.

I went down and talked to the ICU nurses yesterday afternoon. Emily, Bryan and McKenna came by, just as Bill needed cleaned up, so to kill time we went down there so that Emily could see her friend Pete. While they were in with him, I was talking to some of the nurses and told them how Bill had regressed since being moved. They couldn't believe that they weren't talking him through the weaning process and that he was getting very little therapy, since that is what that unit if for. And, actually it's not a unit, it's a separate entity in the hospital. When he was moved, he was actually discharged and then re-admitted. But, we had a good chat and I told them that, since his room was empty, we could just come back! They all said they missed him, even though he did blare the TV. He's doing that upstairs too, but I can't hear it outside the room. They must have it turned lower on the TV itself so that all the sound comes through the speaker on the bed. 

I did get a tip on something that might help with the sundowning from my sister who used to work in a nursing home. I haven't gotten it made yet, again not enough time and it won't take long. And maybe that will help, especially with the agitation when I'm gone. I'll keep you posted on that.

I got to bed a little earlier than I had been, after several phone calls. But, since the ones I talked to, I hadn't talked to for a few days, so I couldn't ignore them. I slept pretty well on the corner of my pillow since Kitty had most of it. She lays on it like a queen on her throne. I wish she would lay on Bill's. but she wants mine (it's softer). And I looked at the clock as I was buzzing around and for the first 20 minutes I didn't even have a chance for a sip of coffee. Bathroom, feed the cats inside and out, take meds, and then get coffee. I've tried to not sit at the computer in the morning but to read my devotions and my Bible reading, but I'm behind on all of that since I'm not taking the computer to the hospital the past few days. I tell myself I'll get it done in the evening, but I'm too tired usually to pick up the books!

So, that's it. Hopefully he had a good night, the vent will be turned down still, he will get in his chair (at least I can insist on that) and it will be a good day. I'll let you know whatever happens!

I've debated with myself on how to write this update. Do I just put down the facts from the 3 pages of notes I took yesterday, or do I put my honest feelings down? I've had several imaginary conversations with various medical people, where I am concerned about Bill's condition, or assertive with how I want his treatment to be. So, this is going to be a hard one to write, and maybe a hard one for you to read.

I know that it hasn't been quite a week since he was moved to Restorative Care, and we lost the entire first day with the problem he had with his heart rate going so high and his agitation. But, he's only seen physical therapy once and speech therapy once and no occupational therapy at all.

The physical therapist, who is the head therapist, will only allow Bill to be moved by using the sling system. This means that he has already, in just 5 days, lost the little progress of sitting on the edge of the bed and standing and taking shuffling steps, that he had made in ICU. I've noticed that he doesn't even want to reach for something. He just smacks on his tray table to get my attention and then points to his urinal. I told him he can reach it and then he does get it. But, that is not progress.

He is also now, it seems to me, dependent on the vent. They have tried twice to wean him down from a setting of 14, which is the vent does 14 breaths a minute of however many he takes. Every time they turn it to 12, he says after a little bit he can't breathe and he starts breathing really fast. I have to stand right in front of him, and tell him to slow his breathing down. I finally told him that when they turn it down, he has to do more of the breathing than the machine does. Dr. Bart wanted him at 10 yesterday and he was put on 12, but raised back to 14 at the first complaint that he couldn't breathe. They need to talk to him about what is going on. He can understand, it just takes a bit longer for him to process it. So, depending on which therapist we have today, I'm hoping it's Walt or Bettie, maybe we can get them to let him work through the agitation. You know they were letting him work through his low sats in ICU before using the vent, and he could get himself out of it most of the time. 

He's also doing a lot of sundowning, which is getting agitated in the late afternoon. Of course part of that is due to me leaving. One of the doctors, and I don't know which one, finally ordered a mild anti-anxiety med. I told his nurse to give it to him as soon as I left yesterday. Hopefully she did. A really good nurse will be back today, and hopefully we will get her again. She and I work well together. The 2 he's had the last 2 days are good, but we rarely saw either of them. 

The infectious disease nurse said that the antibiotics are going to be stopped after the weekend and then they will re-evaluate. He's gotten all of the ones this strain of pseudomonas is susceptible to. His white count is hovering around 15, which is high for a normal person, but he's also on 30 mg of prednisone a day which accounts for some of it. So, it's still just a guessing game.

The cardiology nurse said he sounded "flappy" when she listened, but he was also getting a breathing treatment that blows in spurts instead of continuously so that was probably what she was hearing more than a problem. The pulmonologist and nurse were both pleased with how he sounded. They may have to replace the inner cannula again as it has already moved so that he can talk. She said they can use a longer one that can't be dislodged as easily.

He also seems to be getting more dependent on me than he already was. He gets very upset when I leave, even though he knows I have to. I think he's losing some sense of time, which is understandable. And I only got that impression from a comment he made yesterday about where I had been all day when I got there.

So, this post is not a very happy one. You can probably tell I'm tired, it's been a long week and I got to bed later each night than I usually get there, and didn't sleep well a couple of nights. The cats are also being bad from being left alone so much now. Even though I tell them I'm just going to go see Dad and that I'll be back, I haven't been as consistent with my time of arrival as I had been. But, one of them, and I don't know which one yet, has started using my plants as a little box, only for urine, but y'all know what cat pee smells like! Not a pleasant odor to come home to. It also doesn't help that it has rained all week and for 2 days it was heavy fog and rain both commutes. Tomorrow's drive will also be interesting. VP Pence is going to be in Memphis speaking at a black church to celebrate MLK day. Memphis always has a week-end of service on this week-end. So, some roads will be closed. I haven't seen which ones yet, but it may affect which way I can go. But, on a more positive note, my hip is better! I'm only using my cane walking from the parking lot to the hospital/car. It seems like the first steps out of the car are the worst, probably from being in the same position. But, it's better and the pain can now be controlled with Ibuprofen instead of the pain pills. And, oh my, the wind is howling! Fun times!

Except for getting a few ice chips from the speech therapist, and Stephanie from pulmonary saying to continue to slowly wean from the vent, absolutely nothing happened...zip, zero, nothing.

Bill stayed in bed all day and for the most part we were left alone. I think I'm going to have to insist that he's to be in his chair every day. He doesn't have to stay all day and he can go back and forth, but he must get up.

So, we'll see how it goes today.

And, that is the nature of recovery, it is slow and some days now, there may not be much here, if anything at all. So don't be alarmed if there isn't a post.

Yesterday was a much better day! Bill was awake when I got there, after another drive in the dark mist and fog and said he was feeling much better. He looked much better and the nurse said that he had a good night.

Stephanie came in and said that everything looked and sounded good and to start weaning him off the vent again. They are going to do it slowly, building up to him doing all of the breathing. He's still on 60% oxygen and I think respirations were at 14.

Chris from PT came in and got right to work. He's a little Scot with lots of energy. For safety, until they really get working with him, they are moving Bill with a sling instead of letting him stand and walk. Maybe that will happen when he's off the vent. As he was getting all of that ready, Miss Bettie came in to suction Bill as he was doing a lot of coughing. He actually suctioned his mouth himself, so he was getting some stuff up above the trach, but she went deep. She also changed his cannula and was surprised that it wasn't really clogged. And Laura was in to give meds. So it was quite a busy time. But by 9:30, he was in his chair, had been medicated and was watching TV.

I don't remember if I told you that Dr. Edwards changed his formula again, to one that is typically used for patients with kidney failure. It's lower in potassium and he things the other formula was causing his potassium to go up. The dietician came in and said that she was lowering his rate from 60 mL to 40 as that was the recommended dose. She said this is a much denser formula and she didn't want him to have any problems digesting it.

Janet came in and said the urinalysis showed that he had a yeast infection. This of course isn't uncommon since he's been on so many antibiotics. But, the bloodwork didn't show anything out of the ordinary.

Polly from cardiology make a quick stop in and Dr. Oktied (and I'm spelling his name wrong, but can't remember now just how it is spelled) has raised his insulin to account for the new formula. They don't make a diabetic form of it, so it's just adjusting the insulin.

Bill stayed in his chair until a little after 3:30 when I left. He thought he needed to use the bathroom so they were going to put him on the bedpan. He also hadn't had his trach site cleaned and she wanted to do that when he was laying down. The wound care nurse was also going to come after he got back into bed to make sure he wasn't developing any skin breakdowns.

He's still asking me to take the "circle" off of his neck. Usually telling him that's where his oxygen is going works to soothe him, but not yesterday. I told him if we took it off he would die and he just said "fine, just let him die". But, a few minutes later, even though I could tell by the look on his face he was still perturbed, he was back to himself. When I left he was actually smiling and even gave me a kiss!

It looks like I won't have to drive in the rain and fog this morning, but it has gotten cold again. Oh well, I can take that. Coming home the rain was really heavy at times and everything around was black...and it was only 4:30! At least it kept my speed down!

All from yesterday, I'm not taking the computer today either so it will be tonight or tomorrow before this gets updated again. Unless of course something happens and I'll use my tablet.
Have a great day!

When I headed to the hospital this morning, after only 4 1/2 hours sleep, I expected the day to be busy with therapists and social workers and more paperwork. Instead I came in to find that Bill had to be placed on the vent about 6:30 this morning. He was really laboring to breathe and his heart rate was 132 when I came in. His day nurse Laura had already called Dr. Edwards but hadn't heard back, so she paged him again and found out he was scrubbing in for a procedure. I also gave her Dr. Yaranov's name. 

Cindy came in and ordered an EKG and she said it looked like it could be an AFIB episode. He's never had AFIB, with either heart, but who knows. She said he didn't sound any worse than he usually did so in her opinion he didn't need to be bronched. But, she's with cardiology, not pulmonary.

He seemed a little disoriented to me and kept making strange noises that could at times have been "ow" or "wow" or "help". He did ask me to "take the circle off" meaning the collar that holds the trach in place. He said it was too tight and hurting.

Stephanie from pulmonary came in and had already ordered a stat chest x-ray. In the meantime, Cindy came back and said that Dr. Edwards ordered dilaudid to calm him down some. Laura gave him that and then EKG and xray came back to back. Stephanie said that he shouldn't be able to talk with the cuff inflated, but Cindy and I both told her that he has figured out how to do it somehow. She was going to change the inner part of the trach, but held off until after the xray. She also ordered an ABG which is Arterial Blood Gases to see how he was oxygenating and ventilating. He is a very hard stick and it took the respiratory therapists three tries before they got it.

He had all of his breathing treatments, both the antibiotic and the regular one. Janet from Dr. Threlkeld's office came by and she said that the nebulized antibiotic could cause broncho-spasms so she was going to talk to Dr. T about that. 

He had a very slight temp and it has since come down, although his cheeks are red. It has come down without any meds so it might just have been from the stress or breathing.

When I got back from getting some lunch, I saw Stephanie and she said the xray was perfect, meaning no mucus plugs. She also said that the blood gases were good. They did change the inner collar of the trach and now he can't talk. But, his sats have gone up and his heart rate has gone down. So the thinking now is that because the original trach was leaking air, that was why he was laboring so hard to breathe.

Janet also called the nurse and said they wanted some blood work done, drawn from both his picc line and another site to see if there was any infection at the picc site. They also want a urine sample to make sure there's nothing going on there. So far he hasn't produced enough urine so they may have to straight cath him. I've notice he has now developed some thrush "down there" but they have some nystatin cream and powder to help with that.

The oxygen setting on the vent has been lowered to 60% and the respiration rate lowered from 25 to 20 which is breaths per minute. At my last check, which involves walking all the way across the room to see the monitor, his oxygen was 95 and his heart rate was 108. So now the thinking is that because the trach was leaking, he was laboring so hard to breathe that it caused is heart rate to go up.

I have talked to the social work and the nurse case manager and several of the nurses. The respiratory tech last night remembered us, as did the day and night nurses. Other nurses have come by to say hi. It was almost an exact year that he was brought up here. Last year it was on Jan 15, this year Jan 13.

I've also seen the speech therapist who came in with ice chips and we caught up with the fiasco of Dr. Edwards not wanting him to have any speech at all to when he last ate. I also spoke to the head physical therapist and he just asked some questions. Hopefully Bill will be better tomorrow and able to be evaluated.

When they weighed him last night he weighed 131, which is down 14 pounds from 145 when he was admitted. But, that was 60 days ago! Most people would love to lose 7 pounds a month if they were dieting! I know I would!

I had an awful bout of acid reflux almost from the minute I laid down last night. Probably due to eating dinner so late last night. And after I took the medicine for that, which is chewed, one little teeny crumb got caught in my throat and I coughed until after midnight. I didn't get to bed until after 10, which is very late for me lately, and then started waking up at 4:30 with the cats. I actually started feeling human by the time I got to West Memphis. But, I was not too sleepy to drive and had no trouble in that respect. The fog on the other hand...but it didn't get really thick until I was already at the hospital.

So, there you have today's update. Hopefully Bill won't be awake all night since he's sleeping most of the day. And if he gets agitated after I'm gone, maybe they'll be able to give him some more diluadid. I know they don't want to keep him totally sedated, but they also won't want him to get as worked up as he was this morning.

Hopefully tomorrow's update will be a happier one!

I know a lot of you have been wondering why there haven't been any posts for the last couple of days. The main reason is that nothing much was happening!

I didn't go Saturday until late in the afternoon. His nurse called and said he was asking for me and he wanted her to call. She tried to tell him that I was tied up with the heat, but by the time she called the heat was fixed and I was able to go for a couple of hours. I got there about 5. I found out that his sats had dropped in the morning and they had to put him on the vent for about an hour, but it wasn't in vent mode, it was in PEEP mode. That means that when he exhaled his lungs wouldn't completely empty, the air pressure kept them more open. After an hour he was taken off and his sats stayed up the rest of the day.

Emily and the kids had been shopping in Mississippi and they came by the hospital on their way home. Em and McKenna stayed and rode home with me while Brianna and David went on home. We got home about 8:30.

Yesterday was a very dull day. The most that happened was that Bill got very perturbed when I reminded he wasn't going to get any dinner. I talked to his nurse as I was leaving and she looked at the notes the speech therapist wrote and she's very concerned that he keeps having to go back on the vent. But, we talked about the fact that even though he's getting nutrition from the feeding tube, sometimes you have to look at eating for pleasure, and I think that's where we are, even if it's only soft foods. Food was always important for Bill and the act of eating is what he misses. They also push quality of life, not quantity of life, so I can push that he signed the Advanced Directive that indicates that he wants to be offered food and drink by mouth. All he had been getting is ice chips. 

I talked to Emily and Ryan and his sister about it and we came up with a plan, but I wasn't able to put it into action today. The speech therapist didn't come today, but I did hear his nurse tell everyone in rounds that they were working on getting him back on a regular diet.

Dr. Maddox came in and I asked a little about it and he said that it may be difficult with the type of trach he has. But, he didn't say it couldn't be done.

His potassium was elevated again so he had to have the medicine that makes him poop a lot. That's the only way to lower it rapidly. So far they've only given it to him once, but they just recently drew labs so we should know something soon.

The best news we've had all day is that there is a bed available in Restorative Care and he should be going upstairs around 5:30 or so! They specialize in weaning from vents and trachs and difficult pneumonias and are supposed to have intense therapy. Last year when he was there the only complaint I had was therapy was almost non-existent. But, I know better this time around. If all they plan to do is have him wash his face and comb his hair and sit on the side of the bed, I will complain. They also used either the sling or a stander to move him to his chair instead of letting him try to walk. I even have a video from last year when his nurse and the respiratory therapist stood him up and walked him to the chair. But, the OT/PT therapists were not impressed! So, that may be the next battle. I liked the speech therapist up there, so only works that floor and I think he'll get a lot more therapy from her than he's gotten here.

The room up there will be a little more comfortable than this one, but it still won't have a private bathroom so I'll have to keep going down the hall. But that's just a minor inconvenience. Hopefully it will have better channel choices than here, too. Bill will be happier if he can watch things he's used to watching than mining for gold or making moonshine or living in the Alaskan Bush country!

I probably won't update this again tonight. I'll be tired when I finally do get home. I'm glad I bought a few groceries yesterday, so I can just heat something in the microwave when I get home.

My hip is much better, but I'm still carrying my cane around the hospital. It felt good enough Saturday that I got some housework done, cleaned the kitchen, vacuumed the rugs from all the cat hair swept the laundry room around the litter boxes and folded some clothes that had been waiting on top of the dryer for several days. I've only taken a couple of the muscle relaxers when I've gone to bed, but I don't get to bed early enough to sleep it completely off since I have to get up so early. I do just as well taking a pain pill instead.

So, he's moving on up and these rooms have a better view!

It's a dark and stormy morning. At least it's still fairly warm (hence the storms) because I came home to no heat yesterday. Bryan came over and got it going, but it didn't last long. It's not uncomfortable but when this storm front gets completely through the temps are supposed to drop and then it will get uncomfortable.

I don't know if I'm going to the hospital this morning. We have a wind advisory until noon, already had 7 18 wheelers blown over on the highway, and there have been tornadoes in the Memphis area and lots of power outages. I tried looking at the outage map and the hospital may be running on generator power. It's much better for Bill to be there and taken care of and for me to stay home and off the roads and see about getting the heat fixed.

Bill slept most of the day yesterday and I found out that he had been bad in the night. Kellye said that he had become agitated before shift change at 7 and then was awake most of the night and took his oxygen off and got combative when they tried to put it back on. This can be common for people who are in the hospital for long periods of time, and of course I wasn't there on Thursday so his routine was thrown off. And since he doesn't process information well all the time, he probably forgot I wasn't coming and got a little anxious if they asked him questions, or gave him information.

His numbers were all pretty good for the most part. His sats would drop when he moved as usual. His oxygen concentration was at 60%. At one point he told me that he couldn't breathe and needed a mask on. I told him it wouldn't do any good, that all of his oxygen was going through the place in his throat.

Kellye got the sutures removed, one had already come out on it's own and she snipped the other one. Then she got the site all cleaned up and put a medicated pad under the hard plastic that holds the cannula in. He has been very sore where secretions have irritated it, so maybe this will help.

His hematocrit was a little low yesterday, so he got another unit of blood. They aren't sure why it's periodically dropping because he's not actively bleeding anywhere and there isn't any blood in his urine or stools. They do have a hematologist following, just to stay on top of things.

He's doing well on the new feeding formula. His stools have finally firmed up so maybe he won't be quite as irritated as he has been.

I could have ended up owning the hospital yesterday! As I was heading back to his room from the cafeteria an employee of the hospital (well-dressed in a suit but with a hospital ID badge) came barreling around a corner and just about knocked me over, and just kept going! He didn't even do a stutter step or sidestep or say anything, he just kept going. I really wish I had stuck my cane out and tripped him! I did stumble a bit and it's a good thing I had my cane, but just think of what a stink that would have caused, if someone in administration knocked down a crippled old lady!

My hip is better this morning, no pain when I got up and only minor pain while moving. My hand is more sore from gripping the cane!

So, that's it for now. I'll make a decision before long about going to the hospital after the weather moves through, or staying home to get the furnace taken care of. It's dropped another degree already. Of course, I can take a chance with the fireplace. It's didn't get cleaned again and I'm always leery about using it if it's been a while since it's been used. But, we haven't had that many fires in the last couple of years, so it might be OK. And I do have dry wood in the house. We'll just have to see what happens.

Since this storm system is so wide, stay warm, stay dry, stay safe!

I did not make it to the hospital today. My sciatic nerve is acting up, according to the dr. this morning. I also came home early yesterday due to the pain and didn't get this updated.

It was a basically boring day yesterday. Bill did work with physical therapy and speech therapy, although a little grudgingly. He's tired of just getting to chew ice chips to show that he can swallow and his oxygen dropped when he stood up with PT so he didn't get to walk. 

This thing went totally wacky a minute ago, couldn't be operator error could it? Anyway, they were going to remove the 2 sutures holding in his trach collar. We noticed it was bleeding some after his inner cannula was changed yesterday morning, so it's gotten pulled probably and irritated. But, it's been long enough that they could come out.

His x-ray didn't show any changes or mucus plugs that could have caused his episode the other day so they think it was just the infection acting up again. He hasn't had to be bronched since Tuesday I think, unless something happened today and they just didn't call me. 

The plan is still to move him to Restorative Care when he can maintain his sats on 40% concentration for a couple of days. So far he hasn't been able to do it for more than a couple of hours, and if he does any moving, his sats bottom out. 

I am planning on going to the hospital tomorrow. The meds the dr. gave me have worked to keep the pain at bay. I was using Bill's walker for awhile, but Brianna got me a cane today and that works better. I'm going to valet park so that I will not have to walk up the hill from the parking lot. I'll be right at the door. The dr. knew without me explaining anything that I was hurting from all the driving, walking and sitting in bad chairs for hours. We have a couple of those rubbery cushions they show on TV where you can sit on an egg and not break it. I may take one of those in to see if that makes a difference. They are both in the car anyway with Bill's wheelchair.

So, that's it. I do feel a little guilty that I have enjoyed the afternoon at home doing nothing. I can't say it was the day at home since the entire morning was spent at the dr. But, it was nice to just be home. I know that Bill was well taken care of, his nurse today was one of the best ones and a favorite of both of us, so that made me feel much better.

The weather is going to be horrid the next few days so I don't know if I'll take this with me, especially with having the cane. I need to practice walking with the cane and pulling my backpack before I make a final decision.

All for tonight. I'll let you know how it goes tomorrow. Goodnight!

Bill never did get his xray today, but the doctors didn't wait around and made some changes to his medications. Not only did they order the nebulized antibiotic, they also ordered an additional medication that is supposed to thin the secretions. These are in addition to the 2 bronchodilators he has been getting.

They did increase his sedation a little and that helped him stay calm. We kept the room dark and quiet and he finally quit fighting the vent. He woke up about lunch time and Caleb got him cleaned up and they maneuvered him into his recliner. It took some doing since the chair was on one side of the room and the ventilator was on the other side. But, they got the chair to the other side, along with his IV pole and got him settled...and then Andrea came in to give him his breathing treatments.

The treatments had to be broken into 2 since the antibiotic had to be done separately. She suctioned him after the first one and then did the antibiotic and then switched him back to regular oxygen!

His sats stayed up all afternoon and he stayed in his chair until 4:30. He also worked with physical therapy. He didn't argue at all about doing his exercises, but he tried to refuse to stand. He told him to come back, but Travis said he didn't know if he could do that. I told Bill that if he wasn't going to try to stand he couldn't come home. That didn't work and when he refused again I just told him I was going to make arrangements with the nursing home for him to go live there so that he could stay in bed forever. And, it worked! He stood 2 different times for about a minute each time. The plan for tomorrow is for him to walk from one side of the bed to the other, with the help of Travis and Ella, who thinks she will be his nurse again tomorrow. She's a little tiny thing and Travis is a really tall guy, so it should be interesting to see them.

That's about it for the 2nd half of the day. We didn't see any other doctors and the lung docs just monitored his numbers from the nurses station. They did increase his feeding to 60mL/hour. They also had to increase his heparin drip a little. It's walking a fine line on his clotting factor, yet they're still trying to dissolve the DVT.

I think that's all. I took 3 pages of notes throughout the day, but they are mostly for me. I'm pretty sure I've hit the highlights. So, we'll see how his night goes and what happens tomorrow. I've fed the cats, fed me and it's about time for bed. Goodnight!

This has not been a good day. Bill's numbers were all over the place this morning. I saw Dr. Maddox and another dr. from the lung group stop at the door so opened the door and when he saw his numbers he just said "Crap, we're back to where we were 2 days ago". He did not hesitate to order him put on the vent so that they could deep suction him and use some saline to hopefully keep from having to bronch him. That was done almost immediately and then he was lightly sedated so that he wouldn't fight the vent.

He's awake now and was just suctioned again. He is indicating that he can't swallow and it is hard with the inner balloon inflated. They don't want to keep him sedated if they can help it. He's not fighting the vent, but I can tell he's not very comfortable.

Dr. Sheikh came in and said, after looking at what was being suctioned out, he thought it was more the infection starting again. Dr. Maddox said that pseudomonas and E.coli both grew from the samples they took from the bronch Sunday morning. So he consulted with Dr. Threlkeld and they've ordered 2 different antibiotics, 1 IV and 1 nebulized. They've also ordered a chest x-ray to see if there is a mucus plug blocking a lobe, but Dr. Sheikh thinks it's more the extra secretions from the infection activating again.

He's still really agitated right now and Ella is seeing if they will order more sedation so that he won't fight the vent and try to cough, but she hasn't come back in yet. When she was figuring how much of the sedation to give him before, she was talking to herself as all intelligent people do, and I heard her say his weight, 133.1. He was 136 on Sunday but I think that this weight loss is more from the "cleansing" that was done on Sunday to lower his potassium. He's at the goal amount for his feedings, I just don't like him being this thin. I haven't looked at a BMI chart to see what he should weigh, but I think it's probably more than 140.

All for right now. This will probably be updated a lot today, especially when anything happens.

I took this with me today and didn't even take it out of my backpack. There wasn't anything really wrong, I just didn't feel it today.

Bill had a quiet morning. He said he didn't sleep well last night and was just tired. So he dozed most of the morning. His nurse was Stacy again and she said that his potassium was back to normal, but his blood was a little low, so they were going to give him a unit. She was just waiting for it to come up from the blood bank, or wherever it comes from. The number they look for is 25 and his was 24.4, so not very low. Although I didn't ask and Stacy didn't volunteer, it could be from all of the treatment for the high potassium yesterday.

After the blood was transfused, he was bathed and then got into his chair. The doctors were few and far between today. We didn't see the lung doctors until late this afternoon and Dr. Sheikh was pleased that he was in the chair. He asked me, since he hadn't been on hospital duty last week, what treatments he was getting from respiratory and was satisfied with them. His oxygen was set on 50%, but still at 15 liters. The doctor did say that there was no need to bronch again today after listening to him and if he could maintain his sats above 90 at 40%, he could then be moved to Restorative Care. Of course a bed would have to be available for him, but he would at least be out of ICU. 

He didn't get any therapy before I left at 3:30, even though I saw all of the therapy disciplines on the unit, PT, OT, and Speech. I was really hoping that speech would come in to work on swallowing so that he can eat. Dr. Edwards thinks that he would pass a swallow study, but the therapist is adamant that he won't be cleared to eat until the Barium Swallow Study is done. 

Bill was going to get back into bed when I left and he said that he and Caleb wouldn't have any wild parties with dancing girls, but he wouldn't guarantee that there wouldn't be any shenanigans! All in all it was just a pretty dull day.

Don't know if I'll lug this back tomorrow, we'll just have to see. Just keep looking for the updates!

On a sad note, our young friend with the trach passed away yesterday morning. He and his family fought a hard battle, but he is now pain free. So, when you say your prayers tonight, pray for the Kennedy family.