Monday, December 31, 2018

Well, all good things must come to an end. Don't panic, it's just a setback, but after the good days lately, it was a little disheartening.

When I got to the hospital this morning, Bill was back on the vent mode. I asked Dr. Munday why and he didn't know. He said he was on call and was not called, so they must have called Dr. Edwards. Now, why would you call the cardiologist when it was clearly a pulmonary decision? I finally found out that after a blood gases test, his oxygen level dropped and his CO2 went up along with another bad number and he was confused.

He was still a little confused this morning...and then they gave him his Xanax. Usually for older patients, the standard dose is .25 mg. He was given .5 mg. He was fascinated with his feet and stared at the ceiling. I asked him if he saw anything up there and he said snakes. He didn't want to get in the chair with therapy today, but did it anyway, and as soon as they got him moved, Dr. Munday's nurse came in and said they were doing another bronchoscopy! The nurse told her he just got in the chair and needed to sit for at least an hour. During that hour, his speech became very slurred and he was very confused. That's when I questioned the dosage and the nurse agreed that maybe it needed to be reduced.

Finally put him back to bed and he kept worrying with the remote and kept wanting to push the nurse button for the TV. We finally just gave him his suction tube to hold and he worried it around in his hands, still fascinated with his feet. He told me he wanted to get up and walk and for us to drive right out of there.

They did the bronch this afternoon and he was still asleep when I came home. I was going to stay since he was so confused, but since he slept all afternoon, and had still been up all night, even with meds, I figured one of us needed some sleep to deal with whatever tomorrow brings. They are going to give him 2 different drugs tonight, Respitrol and Benadryl. Hopefully the combination with work.
They did follow my suggestions for keeping the room dark and quiet, but they opened the blinds in his door and window...which let in all the light from the nurses station! So, even though they kept all the lights off in the room, the room was probably just about as bright as it would have been with the lights on!

I'm hoping tonight will be different and he can get some rest. I told his day nurse that if he got agitated to call me and I would talk to him. Although there isn't a phone in his room, but they all have cellphones, both hospital ones and their personal ones. So we will see.

I felt much better after the meds kicked in this morning, but I don't believe I'll try to stay up for the new year. We never do anyway, but the gunfire will wake me so I can tell the cats happy new year.

I've seen some strange things on my trips to the hospital. There's a trucking company that looks more like a junkyard that has a Ferris Wheel set up, not running, but it is all lit up at night. Yesterday morning I saw a sky diver over West Memphis. Mistie told me she sees them all the time when she's working in West Memphis. And this morning, before daylight, there was a car screaming the southbound lanes of the interstate. Luckily the car that had just passed me realized that it was on our side and moved to the right lane. I don't know what happened, just prayed that everyone would be safe until the driver realized what he/she was doing.

So, that's how our year has ended. I had every intention of paying bills tonight, but I'm getting too tired for that tonight. I guess I'll pay the ones that must be paid in the morning and the rest can wait a day, or until tomorrow night. I'm going to get some ice cream and then go to bed before long. Goodnight!
It was another good day! It had its ups and downs, but a good day overall.

When I got there I asked him if he had been waiting for me and he said "All my life"! What a sweet thing! His nurse loved it! I asked when they put him back on CPAP the night before and she said he was on the trach collar ALL NIGHT! And his stats stayed good! She said he got a little distressed when they gave him a bath but he settled back down pretty fast.

He tried so hard to talk and with the inner balloon collar deflated, he can't make sounds unless the trach is capped. Unfortunately, I'm not good at reading lips and toothless lips at that. He doesn't want to put his teeth in for some reason. He wrote a little on a pad of paper, and I stopped and got him a white board which may be easier for him to use. Jessica said she may get him a speaking cap ordered so that he can talk. He was getting so frustrated when we couldn't understand him.

They took him off the precedex thinking that was making him too sleepy during the day, yet they doubled the amount he was given at night to see if it would help him sleep and it did not. He was awake most of the night again, so we were trying to keep him awake yesterday. They also thought it might contribute to the lower heart rate.

He sat in my recliner for a couple of hours yesterday which of course will help his lungs inflate more completely. All of the drs. I saw said that he sounded much clearer. He did have to be suctioned a couple of times, but most of the time he was able to cough hard enough to clear the secretions.

When they were putting him back to bed, because he needed to use the bedpan (which was another first) he got very combative again. It didn't take long for the precedex to get out of his system! So, they switched him to Xanax. I don't know how high the dosage is but he was on a low dose of that for years before the transplant. They were also going to give him something different from Benadryl at night to see if that helped.

I gave Jessica some suggestions for him at night, keeping the room as dark and quiet as possible, using only the hallway light to do something if necessary, not telling him what they were doing unless he woke up, just do it quietly. She said that would be helpful, she thought, but she did say that when I wasn't there, he did get very anxious, even if I left the room for them to do something. But, I can't be there 24/7. We'll have to talk about that some today, especially since I need to get the oil changed in my car. I will also need to pay the bills tonight and tomorrow and I don't want to do it from the hospital with their crappy internet.

And today, I don't really feel well. Not only am I tired, since it takes more energy when he awake than just sitting quietly while he's asleep or sedated. And the weather is finally getting to me. I'm hoping it's just normal sinus problems but my sinuses are draining like crazy and my throat hurts some, from the drainage. I would really like to call the hospital and have them tell him I'm sick and staying home, but I won't. It has made my decision about staying tonight easier. I couldn't decide if I was coming home to the war zone we have on New Years Eve, or stay at the hospital. And now, I'm coming home. I'll leave early enough that I'll miss the crazies on the road. Of course it's nice and rainy this morning and supposed to rain most of the day, which doesn't help. But, I filled up with gas last night so won't have to really be out in it and my coat has a hood. 
So, still making progress, tweaking meds, and keeping him moving forward. I hope everyone has a blessed new year. I hoping ours will be better than 2018 was, even if it will be a little rocky to start. Happy New Year!

Sunday, December 30, 2018

What a difference a day makes! When I walked to Bill's room and stopped outside the door to gown up I could see that the lights and TV were on. His nurse said that he had been looking for me since she came on at 7 and he wanted her to call me to find out where I was!

I went in and he was awake and alert and had the remote for the TV and was trying to change the channel (or maybe thought it was a phone and was trying to figure out where the numbers were to call me). 

He started talking, and I mean voice talking around the trach, the minute I walked in. Once I put everything down and stood by the bed, he started asking questions. He wanted to know where he was and what happened and how long it had been. So, we talked about what happened. He didn't remember anything about the nursing home and when I told him that his oxygen level had gotten to 44 before they called me and that his body was shutting down, all he said was wow. He then skipped subjects a little bit and said he wanted to go to the bedroom, he was tired of that room!

At one point he reached his hand over the side of the bed and when I reached for it, he shook his head and said coffee. He wanted my coffee cup! I told him he couldn't drink anything with the tube in his throat and he said his mouth and throat were very dry so I told him we would see about getting something for that.

I told him about the peg tube and that it would probably stay but just to make sure he got enough to eat and so far he is OK with that. But, he took in a lot of information in a short period of time.

He let Jessica administer his meds and do what she needed to do without getting combative like he had the other day with Austin and he let her clean his mouth. I think that his sinuses are draining some. It looked like the secretions in his mouth were rather thick. But, when he coughed and asked her to suction him, she barely got anything out. And he wasn't gurgly at all. He did do some coughing but it wasn't anything bad.

Again, he had been up all night. Instead of giving him the benadryl the night nurse just increased the dosage of the anti-anxiety med, which doesn't make you sleepy. So I told Jessica there should be an order for benadryl and to use that. So, he slept off and on most of the day. But, whenever he would wake up, he would start talking again.

They had not been able to use the trach collar Friday. It just got too busy in the unit for Bishop to be able to watch over him as he needed. So, about noon, they put it on. At first he said he couldn't breathe but I talked him through it, telling him that he was getting all the air he needed through the tube and he just needed to breathe slowly. He finally slowed his breathing down and did really well. We noticed that when he was sleeping, and not thinking about what he was doing, his numbers were fantastic. His oxygen level at 99 or 100 and his respiration rate was 20. They want it between 15 and 30. He is off the medicine to raise his blood pressure and it stayed good all day. He's still on the one to keep his heart rate above 80, but on a low dose.

Jessica was going to give him a bath before I left, but after she did his trach care, which is painful for him, his numbers went down some so she decided to let them come back up and then do his bath when they put him back on CPAP. That way they could increase his oxygen flow if necessary.

Dr. Edwards came in and explained his reasoning on why he didn't want to send him to restorative care, and it makes sense and if he had said that in the beginning, I wouldn't have questioned it. He said that right now, because Bill still has so much thick mucus, he needs the respiratory care he gets in the ICU. He has not ruled restorative care out at a later date, but he wants to get a handle on the secretions first.

All of the drs. said he sounded good yesterday, so maybe they finally got enought of the stuff out. I did notice when Jessica changed the inner cannula, it was pretty junky and that stuff is so thick and sticky. He also has an open sore, more like a blister, under the sponge they keep to catch any secretions when he is on the trach collar. So she was going to advise Dr. Threlkeld to see what he could order for that. She thought the cream with lidocaine wouldn't dry it up and might burn it and the only other thing he had was nystatin for yeast. He probably needs more of a neosporin/hydrocortisone cream.

He was still on the collar when I left so I don't know how long they planned to leave him on, and it had been 4 hours then. So I'll see how he is this morning.

I haven't decided if I'm staying in Memphis tomorrow night or coming home. Our street will sound like a war zone at midnight. I've lived here for more than 30 years and have yet to understand the reasoning behind firing guns at midnight. And yes, they fire into the air, but it has to come down somewhere! The police have said that they will not condone gunfire and there will be extra patrols out. Our neighborhood, on some of the other streets, are very active on New Years Eve with the weapons. So, I'm kind of torn between staying at the hospital where it's safe, and not mess with the crazy traffic, or come home to make sure everything is OK with the cats and the house. If I do decide to come home, I'll leave before the festivities really get started. I think it is also supposed to start raining tonight (might be a fun drive home tonight) and rain most of the day tomorrow. There is also the Liberty Bowl football game to consider. I saw several charter buses travelling together on the way home and if I remember right Missouri is playing in the game so it was probably their team and fans. I also saw a Mizzou panel truck heading south, probably equipment for either the players or the band. Funny the things you notice!

So, That was the great day we had yesterday. And, I set a new personal record...I had not cried since Wednesday! I think. That's the last day I remember crying, whether good or bad. I didn't cry when he stood the other day, so I'm thinking Wednesday was the last day. I don't know how long it will last, may end today. But I think the days of daily tears are in the past. And the tears aren't tears of sadness, they come mostly when people are nice. That's what gets to me the most, a kind word or hug and it's over. But, until it happens again, I'm going to relish it, that I got through the day, made my goal of not crying.

That's it, time to start getting ready to leave so that Mr. Impatient won't be going crazy looking for me!

Friday, December 28, 2018

Today was not as good a day as yesterday and I'm pretty tired and getting a headache, but I don't want to wait until the morning to update.

When I got there this morning, Bill was still sleeping and I noticed that the meds to raise blood pressure and heart rate had been started again. Connor said that they both started dropping a little after I left yesterday so Dr. Edwards wanted to start the meds again. The one for blood pressure is set at such a low rate he's barely getting any. But, his pressure is staying up more, so it's enough when added to the other blood pressure medicine he gets. His hematocrit was also under 25 again, so he got a unit of blood. Because of the added meds, in addition to the ones he had been getting, they needed to bring in another IV pump and start another IV. That was the tricky part, his veins are shot. Connor couldn't get one, but Bishop did, although he lost it this afternoon (more on that later).

Bill was sounding a little junky again, so they did yet another broncoscopy. I heart Connor say that of the 14 rooms in the unit, 12 were getting bronched today. Dr. Munday was very busy!

Bill slept off and on most of the day after that. He said that his throat hurt and we figure that it was from the procedure and he was snoring and since he doesn't have much to keep his mouth moist it's not surprising. 

He started reaching for his groin area and I told him he couldn't go there and he told me he had to pee and poop. I told him there was a tube there and he could go ahead and pee and that they would clean him up when he pooped. His stool was a little more solid today than it had been, which is good because the insides of his legs are so chafed from all the stools. Connor said that he did urinate around the catheter a little. It was surprising that he felt the urge so maybe they can start trying to get the catheter out.

They were going to try the trach collar, but it hadn't been done when I left, and I don't think it would be anyway. Connor only worked until 3 today and Bishop, who took over for him, was also in charge of the unit today, and 2 new patients came in after 3.  The respiratory tech wanted to make sure that Bishop would have the time to devote to watching him to make sure he didn't get into trouble, and since he was going to be tied up with the one of the new patients I doubt that it happened.

After Bill got his Cipro, when the IV pump beeped that it was finished, he told me that his arm hurt so I looked at the site and it was red and swollen. Lauren came in and looked at it and said that it would have to come out, but since he wasn't her patient she didn't want to do it without Bishop knowing. So she wrapped it in a warm cloth to see if the swelling would go down. I imagine they got it taken care of by now. I hate that I needed to leave when I did, but my head was starting to really ache and it was getting to be a bad traffic time.

I think that's all of the highlights, without consulting my notes. And I'm too comfy here to get up and get it.

And now, a personal note, Mom, thanks for the caramels! Ronna must have told you what I did! Anyway, Ryan came by tonight for a few minutes and I shared some with him even though he said I didn't need to. But, I will savor the rest!

Goodnight all, more of this saga to come tomorrow. Hopefully it will be a better day again.

Thursday, December 27, 2018

This news is too good to wait until morning! But, before we get to that, Bill was awake when I got there this morning and in a good mood. His nurse said that he was told he slept 4-5 hours last night with the help of a little Benadryl. But, the good mood did not last as, the Evil Bill from steroid world showed up and out.

He told Austin, the nurse, to leave him alone when he tried to push the meds through his peg, declined his anti-rejection med that goes under his tongue (that didn't work) and started fighting him when it was time for his blood thinner shot. Austin gave in on that one and then had to leave for rounds. Bill told me he wanted them to respect him and I told him they did, but they had worked very hard to keep him alive and they were only doing their job. I then reminded him that Austin was bigger than he was. He was better after that, until it came time for his bath. 

Before Magnolia started I told Bill he was going to let her give him a bath and not fight her on it. That basically worked as she decided that when he started acting out, she would just stop the bath. But, he had a bowel movement and needed cleaned and he didn't want anyone near that area. He is very tender there, from the antibiotics and the frequent stools (and I know that's more info than most of you want to read). Anyway, Austin came back in to help and while he was holding Bill on his side while Magnolia cleaned he asked me for the shot from the computer stand and he gave it to him without him even knowing it.

Each time Bill started being combative, he would have a panic attack and say that he couldn't breathe, although his numbers were showing that, except for his respirations being high, his oxygen saturation was in the upper 90s.

After his IV med had finished, Austin came back in and said he was going to give him a mild anti-anxiety med, not enough to really drug him, just enough to take the edge off. I agreed that he needed something so he started it. Bill did go to sleep, and slept well, but he could be roused easily.

Physical therapy came in late in the afternoon and asked if she could wake him for therapy. I told her sure, and he agreed to work with her. They did some arm and leg exercises, just to keep the muscles moving and then she asked if he would sit on the edge of the bed for her, for just a minute. Yesterday he declined, today he said he would try. And now is when it gets good

The occupational therapist came in about that time and between the 2 of them, they got him to sit on the edge of the bed. He probably sat there for a couple of minutes, with no support other than his hands on the bed for a bit. They then got a walker and belt and, wait for it....HE STOOD! For the 1st time since Dec. 1, he was up on his feet! It was only about 30 seconds because he said he felt dizzy when they asked, so they sat him back down and then got him back into bed. I didn't take any pictures of him, because I was behind him and didn't want to break his concentration. And I don't think you would want to see his tushie.

We were all very proud of him, especially that he made the effort to try. And the drs. thought he should go straight to hospice! They just don't know Bill and his determination!

He sounded all gurgly most of the day and shortly before I left Austin came in and said his collar was loose and the trach was becoming dislodged like it did the other day. So he pushed it back in and the gurgles stopped. It also stopped Bill from talking so we had to go back to lip reading and facial expressions.

So, that's the great afternoon he had. A real breakthrough and progress in his recovery! Let's see what tomorrow brings!
I tried to post during the day yesterday at the hospital, but they are upgrading the internet (yay) so I couldn't get a good connection.

Bill was awake all night again, but nursing was better. Nikki looked at his chart and then told me the times he was due things. It turned out she would be in about every 2 hours, mainly for hanging meds. But, she used only the light that came in the windows from the hallway and didn't turn on any lights unless absolutely necessary, like cleaning him up after a bowel movement. Even when she needed help they both spoke in very soft voices, so even though I was aware most of the times someone else was in the room, I slept much better than the night before. I did ask Nikki if Bill slept any and she said no, he was awake all night.

He was junky again yesterday, so another broncoscopy was done. Dr. Munday did this one before rounds and I had breakfast and was back in his room at 8:30 and he was already awake. I don't know what sedative Dr. Munday uses compared to Dr. Williams, but it isn't versed, or at least not as much. I thought that Bill would again sleep  most of the day because of that and staying awake all night, but he did not. He catnapped for awhile.

Cindy, the cardiology nurse practitioner, asked him if he knew the people in the room with him when Mary-Rose and Jack and the kids were there and he nodded and mouthed "William and Petra". It was very clear to both me and Mary. He's been trying to talk so hard and we just can't understand him.

While we went to lunch and then saw them off, PT came in and I think Bill was trying to tell me that they wanted to talk to me. He kept saying "you" but I don't know what else he meant. Jacque did come back in and told me that he did work really hard moving his arms and legs and hands for her, but he drew the line at sitting on the edge of the bed. Maybe because it was only the two of them and he was afraid of falling. She said she really wanted him in the chair, but because all of the nurses were busy at the time, she didn't want to try to transfer him herself. But she was impressed with how hard he tried.

He's done a lot more spontaneous moving around, and he's been shifting in the bed more so they aren't turning him as much. They try but he manages to get back into a comfy position.

We're still waiting on podiatry to come, unless they came after I left yesterday afternoon. I left a little earlier than usual since I was so tired. Talked to Joe and Barb and Paul (our behind neighbor) for a bit. We all met taking out the trash! 

I don't remember if I told what Dr. Williams said. Because Bill keeps breathing fast, he doesn't want him back on the trach collar until his respirations are below 30. He's been staying in the mid 30s and that's really double what he should be breathing. His blood pressure has been a little erratic again, so more albumin to build volume, but no blood, and no Levaphed. 

While I was in the cafeteria yesterday morning, I started thinking about all of these bronchs. I don't know how many times they can be done without causing damage, but he's having them every 4-5 days because the secretions are so thick they clog the trach cannula and he's having to be suctioned so much. In my fatigue laden brain, it finally broke through that he was on Musinex twice a day to keep the secretions thin before. So I asked Dr. Munday about that when I got back upstairs and he said that could definitely be tired. He wanted to try a breathing treatment using just warm saline first but if that didn't work, then go to the musinex IV. So, if they do that, maybe the secretions will stay thin enough he will be able to cough them out and the bronchs can be done less frequently.

I don't think he has anything scheduled for today, other than his daily chest x-ray. As far as I know there was no fever yesterday. Dr. Threlkeld was back and he was going to look at everything and see if he concurred. I ran into him again as I was leaving and he said get some sleep, so I must have looked as tired as I felt. But, had a quiet night and went to bed early and slept better than my usual 2 hours at a time. 

And now I'd better get a move on. I had wanted to leave at 6, but I'm not dressed yet, and I have 5 minutes, so I don't think I'll make it. It's warm and very windy and going to be rainy so it will be a very fun drive, I'm sure. And I have to make a stop for gas first. Glad I bought the donuts last night!

I'm not taking the computer today, too much to lug around. So, I'll get back to the regular schedule of updates now. All for this morning, gotta get a move on!

Tuesday, December 25, 2018

As I had expected, Bill has been staying awake all night. It hasn't been because he wants to stay up watching TV, it's because they won't leave him alone. Now, I realize that some things must be done, like hanging meds and drawing labs, but why do a bath at midnight when it could be done closer to end of shift? And instead of just opening the door to the room and work by the light from the nurses station, which are supposed to be dimmed at 10, they flipped on the overheads. They also started the percussion part of the bed at 12:45 am and it runs for 15 minutes...thumping and thumping and thumping. Think about listening to a loud car in the summer with it's windows down and the music blaring. The room doesn't get dark enough for Bill, but there's not a whole lot I can do about that.

And, before I forget, the respiratory tech is not Chad but Corey. Anyway, he's still a super nice guy who likes Bill a lot and that's all that matters to me.

Mary-Rose, Jack and the kids got here about 7 and brought a small Christmas tree that the kids decorated and a beautiful glass nativity ornament that lights up and changes color. It will really pretty on a silver ornament stand instead of on the tree. It's pretty big. They didn't stay long as they hadn't eaten and they were pretty tired from travelling all day. Petra and William both talked nonstop and it was like watching a tennis match with one on each side of me! But, I didn't stop them!

Bill slept through it all so they didn't stay long. About 9 I turned off the TV and sat with just the tree lights on. I had planned on leaving them on all night, but it was too bright! So, off they went and out I tried to be and people started coming in. From 9:30 until 12:45, someone was in the room about every 30 minutes.

I went to the bathroom down the hall about 2 and noticed that the 3 rooms I have to pass all had their doors open, all the lights in the room out and the TV on. I know when I've come in the past, the TV would be on when I would get here in the morning. Anyway, I told Bill where I was going and when I got back his nurse was in the room and Bill was very agitate about something. I asked him what he wanted and he said "you". I told him again where I had been and then he said he wanted his cell phone. I told him it was at home and when he could talk, I would bring it to him.

People were still in and out of the room. I finally slept from 3:45 until 5:30. I've made it up until now without a nap, but it's probably not going to be very long until I'm done for the day.

Because he had stayed awake all night, he has slept almost all day. When our nurse went to get a new bottle of food for him, she was told that the entire hospital was out of that particular food. So, he's been switched to Glucerna. So far he has tolerated it, but he's also having frequent stools again. I hope that's all it is and nothing else going on.

My chair is not comfortable to sleep in. It aggravated my shoulder and elbow, but I came prepared with Biofreeze and so far it's been tolerable. I'll sleep in it again tonight and then my own bed tomorrow night.

Our nurse Lizzie was going to make sure that the night nurse Nikki knew that we were trying to get Bill straightened out. She said his bath will be at the end of the shift instead of midnight like it should be. She was also going to make sure they knew to dim the lights.

We were able to open our gifts, but Bill wasn't really interested in them. He was more interested in sleeping.

So that's it. It will probably be an early night for me anyway, and hopefully for him to. His nurse just came in with meds to hang, so the fun begins again. I'll let you know how it goes tomorrow.

Monday, December 24, 2018

I think I got my Christmas gift early this year! Bill was alert and awake again this morning when I got here. His nurse told me they had tried the trach collar earlier, but it hadn't gone well so they put him back to CPAP mode.

He was really responsive to everything today and this afternoon he was put into the stroke chair. He seemed very comfortable for the most part, but considering that this is day 22 in ICU and the first time he has been out of bed in that time, it was great to see.

Dr. Edwards came in and said he's definitely on the right path and since he's basically doing all the breathing, even on CPAP, he thinks Bill might be ready to go back to regular oxygen and then start capping the trach.  He also said that he wants to start working toward removing the catheter.

Bill has moved well today, raising his arms and scratching his nose, but when I got here his arms were in the soft restraints. He kept pulling at the trach during the night. He also reached for it at times today, especially when something was being done to him. It seems to be missing a small piece of accordian tubing and it comes apart really easy.

Occupational therapy came in and just worked his shoulders some. She asked him if he wanted to lose the moustache and he shook his head no. He wasn't really interested in working at that time since they had just bathed him and put him in the chair.

While he was in the chair he crossed his legs, slid down until he was sitting like he always sits at home, took the pillows out from under his arms and took his sheet off. Then he started shivering some but couldn't put the sheet back on.

The best part of the day was when the respiratory therapist Chad came in. He is a very tall, soft spoken young black man who has always been very gentle with Bill and has said that he can tell that he is a nice person. When he finished doing what he had to do Bill gave him a wink and he told him that he appreciated that and told Bill Merry Christmas. Bill reached out to shake his hand and then told him Happy New Year! And he was very understandable! I just sat in my chair and cried, but this time they were happy tears!

We're waiting for Mary-Rose, Jack and the kids to get here. They should be here any time now.  I think she'll be surprised at how far he has come in the week since she was here before.

So, it has been a great day. I hope the evening is peaceful, and that I can sleep in this recliner. I'll let you know in the morning!

Sunday, December 23, 2018

Today was a fantastic day! Bill was awake when I got there and they were just getting ready to put the trach collar on. He had even been in CPAP mode all night! They did not turn the vent on vent mode, so he did all the breathing all night! 

He did pretty well, got agitated when he had to be cleaned up and he started breathing too fast and his sats dropped, but we talked him through it. His nurse was Diane again, and she is wonderful. As good as all of them are, certain ones stand out, even more than favorite ones, and she is one of those. 

He also did a lot of coughing and the stuff he was getting up was so sticky and thick it clogged the suction tube, so when he didn't get it completely through the trach tube, I can imagine that it seriously reduced airflow. After one suctioning, Diane asked if they had ever turned his bed on and I said no. Now, remember how they used to treat pneumonia patients back in the day? They would manually beat on the back periodically. I had just been thinking about that this morning on my way to the hospital, wondering why they didn't do that anymore. Well, she pushed a button on the bed and it started vibrating very hard, really thumping. I kept feeling that it would feel really good on tight muscles! After 10-15 minutes it started going really fast for a bit and then stopped. She said that could be done about every 2 hours. He started coughing and bringing more stuff up to be suctioned if he couldn't get it all the way out. Not only was it very thick and sticky, it was pink tinged, but I think that was from the bronch still. It wasn't yellow or green that I could see but white.

About 4 he was really getting tired and the respiratory therapist came in and decided to put him back in CPAP mode. I think they were going to try to keep in there again tonight and not use the vent mode at all.

Dr. Williams was very pleased that the vent was not used and said that he was looking and sounding a lot better. Dr. Omer said his temp had come down, even though his white count had gone up a little more. But, he's on antibiotics so she's not overly concerned.

They have finally gotten a dr. to agree to a podiatry consult to care for his toenails. They are so hard that even after soaking them, I don't have the strength to cut them and some of them are extremely long, while others have curled under and are going to start cutting into the underside of the toe. Diane put the request in, but because of the holiday, she didn't know how soon it would happen.

So, as bad as things seemed to be a couple of days ago, God is still in control and He's giving more hope at Christmas. Not a Christmas miracle as such, but enough of a miracle for me!

I'm staying at the hospital for the next 2 nights so that we are together for Christmas. I'm planning on putting some music on here and maybe try to find a loop of a fire and try to make a cozy little room for us. Since I don't know just how the hospital internet will be, although I have figured out how to make my phone a hotspot and then connect through it, I should be able to post. But just in case I can't, I want to wish everyone a Merry and Blessed Christmas. Thank you all for your prayers and good thoughts. I know He hears them and so far they have been answered in the way we want. 

Merry Christmas!

Saturday, December 22, 2018

Today was a better day than yesterday, but nothing to write home about...except that's exactly what I'm doing! It was also a strange day and we've got to figure out what's happening.

Bill was awake when I got there and the vent was in CPAP mode. But, his numbers were all over the place and he was again laboring to breathe. He wouldn't respond to questions and kept dozing off. He slept off and on most of the day.

Crystal, the respiratory tech really wanted to try the trach collar again, but because he seemed to be fighting the vent, decided that he was too agitated to attempt it without causing him more distress.

The only time he really responded in the morning was to Dr. Williams who rubbed his chest and woke him up. He asked him how he felt and Bill mouthed "fine". We both called him a liar and he smiled. Since he was still running a low grade fever his nurse asked about some Tylenol and Dr. Williams was a little reluctant to order any. He feels that it's still just a reaction to the bronch yesterday and said it's not uncommon to spike a 102-104 degree fever after one. He also said that it could tell them if they've missed something somewhere.

Dr. Omer started him on Zosyn, an antibiotic that the bacteria seemed to respond to. Of course it will take a few doses for it to make a difference.

Emily, Bryan and the girls came to visit and he barely opened his eyes the entire time they were there. He finally really went to sleep and all of his numbers evened out. Crystal came back and said that his respirations were the lowest and best she had seen them.

A big surprise for me was to see Dr. Edwards! And he actually talked to me and listened to my questions and comments. I told him at one time Bill's monitor went off and it showed his heart rate to be 209 beats per minute and then immediately dropped to 104. He, Dr. Edwards, immediately went and looked back at it and came back in and told me that if was artifact, which is a false reading. It may have picked up a vibration from somewhere or something, but it wasn't anything to worry about. He did say that Bill has come a long way in the last 4 days and he thinks that he's on the right track with getting weaned from the vent and then get the trach capped and reduced. Capping it means he will be able to talk and reducing it is the size of the tube used until it can be taken out completely and his throat healed. He thought that the peg feeding tube was the right way to go and he's of the opinion that Bill not eat or drink again to avoid aspirating again. I still don't think that will happen, but only time will tell.

After Dr. Edwards left, right about time for me to leave, he really woke up when Diane came in to do her thing. I heard her laugh and he was smiling his big toothless smile at her and winking! After she left, I went to the other side of the bed since that was the way he was turned and he was really awake this time. He blew kisses and when I told him that McKenna told me she had decided what her 1st girl's name would be, he laughed before I even told him the name! I hope she's not planning on it any time soon since she's only 14!

We actually think the problem with him wanting to sleep all day is that's he's staying awake all night. It could be just the effects from the anesthesia yesterday lingering, but this is not an isolated incident. Diane was going to make sure that his nurse tonight was going to turn the TV and lights off and make sure his door was closed. I guess I'll find out for sure Monday night when I stay with him.

So, it was a much better day than yesterday, yet still not as good as it had been in the days before. Hopefully, tomorrow will be even better!

Friday, December 21, 2018

As good as the past 2 days have been, today was the one step backwards. When I got to the hospital the morning, they were just getting ready to switch Bill from the vent to the trach collar. Mike, the respiratory therapist, said that he had been on the trach collar last night until about 11:30 and that's when they put him on the vent so that he would rest through the night. But, as soon as the inner collar was deflated and he started coughing, he coughed out some really nasty thick junk. Now that I think back on it, the secretions had started to thicken yesterday afternoon when Connor suctioned him. Anyway, they put the collar on and his oxygen immediately started dropping, getting to the low 80s. His heart rate started to climb, almost to 130 beats per minute. He seemed to really be laboring to breathe, no matter what was done, and after about 10 minutes, he was placed back on the vent.

His oxygen level stayed low, but low 90s finally, and his heart rate settled about 115, but he wasn't gasping as much. The resident came in and listened to his lungs and said they didn't sound that bad, everything seemed to be near the trach site. But, he thought that another broncoscopy should be done. He ordered a chest x-ray just to be sure and was, of course, going to consult with Dr. Williams.

After the x-ray, Dr. Williams agreed that the bronch needed to be done. It was supposed to be done before noon, but there was another patient in crisis and that tied up the respiratory team until about 2. When I got back to his room, he was still gasping for air and the filter on the vent was full of bloody froth, but the therapist was soon there to change the filter. Finally, after talking to Bill for quite awhile, he finally calmed down and was able to continue to sleep off the sedation. All of his numbers eventually evened out, even though his oxygen stayed low. His heart rate finally dropped below 100 and smoothed out. Jacinta told me that with the sedation that was used, it's not unusual for the numbers to be suppressed some.

He.was also not as responsive as he had been. I had to force him to focus on me, and it seemed to take him a longer amount of time before answering. He did do a little physical therapy, but he really had to be coaxed to respond to what she was asking him to do, which wasn't a lot. Instead of moving him to the chair, she just put his bed in chair mode to keep him more upright. He did do a better job of holding his head erect than he did yesterday.

He's had a slight temp most of the day and the Infectious Disease team came in and said that his white count had gone up some, from 9 to 11. That's not alarming for most people, but the Dr. thought that he should be started back on some antibiotics. They were supposed to be started tonight.

I finally got a smile from him before I left, and he was becoming more aware. Hopefully he woke up more and became more himself. 

I have wondered if the amount of time he was hypoxic at the nursing home affected his mind, or caused another small stroke, but I don't think any of the other drs. have entertained that thought. Maybe it's just because I know him better and what he was like before. It could still be the effects of all the propofol, it's just hard to say.

I am totally exhausted and just about rocking myself to sleep while I'm typing this. I have been very short with the cats, especially the little one. For those of you who have called, today was a day when I just needed to come home and decompress and not talk to anyone. I know you are all just concerned about Bill. Please understand that it's nothing personal, I just need the evening to mostly sit in silence, not even watching TV, just petting the cats. Also keep in mind that even though my main duty now is to be with Bill, all of the normal "life" things fall to me to care for. That also takes any extra time that I can find. Yes, I'm tired and emotional tonight. 

And with that being said, I'm setting the coffee and going to bed. Tomorrow will be a better day.

Thursday, December 20, 2018

The internet was speeding right along before 8 this morning and now it is, well it's not as slow as Christmas since that is next week, but you get the idea.

Bill's blood pressure was running low this morning and the peg placement was in jeopardy for a bit. But they gave him a boost of albumin and the procedure was done about an hour ago. I've been back in the room for about 20 minutes and his pressure is still running low, but Connor said that's normal because of the sedation.

Dr. King said everything went well. His stomach looked normal and the peg was placed with no problems, so they could remove the ng tube. Even without his teeth, he looks more like Bill now without that tube in his nose and I won't keep grabbing his hands so he won't try to pull it out.

Dr. Williams gave me a thumbs up this morning, but I don't know if it was to let me know that the peg placement was on, or if it meant that he had convinced Dr. Edwards that restorative care was where he needed to go.

The cardiology team still thinks that he will only get tube feeding from now on, but again, they don't know Bill and his determination. Mayo thought the same thing. Once he's getting the correct speech therapy, who knows what will happen. He will probably need supplemental feedings as his main nutrition, but I truly believe he will be able to eat again. And for you who personally know him, you know how much he likes his food!

He still hasn't completely come around and of course is back on the vent until the sedation wears off. He had been put on the trach collar again before the procedure and was doing well, but since he had to be sedated, they wanted the vent support, which only makes sense. He was on the trach collar for at least 8 hours yesterday as I said last night and only had 2 episodes where his sats dropped and that was when they were doing something to him. While she was changing him over today, she needed to put some more water into the tank and he was breathing room air for maybe 10 minutes and his sats stayed in the mid 90s until right before she turned it back on. So he's coming along, now we just have to see what the plan is going to be.

Bill slept most of the afternoon and they put the trach collar back on around 3. He did so well, even sleeping his sats were anywhere from 97-100! He's still coughing up some nasty stuff, but he is coughing it out so his muscles are getting stronger. Everyone who listens to his lungs say they don't sound bad, but his upper airway is still junky.

Connor wanted to put him in the stroke chair, but it was being used, so he turned his bed into a chair. Because he's been laying so much, it seems like it's hard for him to hold his head up, so Connor tilted the top of his bed back some. He was still pretty much upright, just not straight.

When I was getting ready to leave I told Bill that I loved him and he mouthed back I love you. First time for that and boy, did I need to "hear" it! I've got to get his teeth in my backpack tonight. We're hoping he'll want them in and that will help with lip reading. But, is mouth is still swollen from the biter bar from the vent. I had been looking at his mouth trying to figure out what was different about it and finally saw his bottom lip is bruised. It looks like he's wearing dark brown lipstick. So, I don't know if his teeth will fit or not.

Connor was disinfecting the stroke chair when I was getting ready to leave and he told all the nurses that 2934 has dibs on the chair. He said he's off tomorrow, but Jacinta said she would be there and would make sure he got to use it. Connor told me I didn't have to come in early as nothing was planned for tomorrow. And I said good, I can leave at 6. He told me to sleep in until 6, but I told him the cats will wake me between 4:30 and 5 anyway. But, I'm going to leave at my normal 6. The traffic was much heavier at 5:15 than 6. 

When I got home there were a couple of packages waiting. They had just come because it's been raining and they weren't wet at all. Joe said he had come over about 5:30 to see since I knew one of the packages was coming. So, Ronna, it did come on the 20th. They are in the closet with the others until I take them to the hospital Christmas Eve. The other one was beautiful roses with evergreen from Bill's sister and her husband. They are so pretty, but unfortunately the ICU doesn't allow fresh flowers. But, I took pictures of them to show Bill. Hopefully the cats will not try to jump onto the mantle. That was the only place I could think of to put them that they (Mouse, mostly) couldn't reach. Don and Shirley, thank you so much, they did brighten my day after driving home in the wind and rain!

I think that's it for today. It was a long day of waiting and I didn't sleep well, awake every 2 hours. So, I think I'm going to call it a day and crawl into bed. Kitty is already asleep and I think Mouse is about ready himself. He's being very quiet tonight, unlike the wildman from the other night. Goodnight!

Wednesday, December 19, 2018

Today was a great day! Seems like it's been a good while since I've said that.

I listened very closely when the team was rounding this morning. Although they stay out in the hall and speak rather softly, if you listen hard you can hear what is said. Jenifer, a nurse manager, said that he was on track to be moved Friday to Restorative Care, and Connor, his nurse said that Dr. Edwards had nixed the plan. Everyone kind of looked at Chandra who is the nurse practitioner for cardiology who rounds and she said that even though she was not in the morning team meeting, she could hear Dr. Edwards yelling at everyone. She then told Dr. Williams that when she raises her voice, she's told she's being emotional! So, my opinion of Dr. Edwards being arrogant still stands, at least in my book.

Everyone I asked this morning just gave the standard answer of "He's the boss" or "he's gotten him this far", until I asked Dr. Williams if he knew what his reasoning was. He said it was just personal, he didn't like that kind of medicine, it was a step down in his (Dr. Edwards) opinion. He said they had sent a couple of patients there who hadn't done well and had to come back down to the unit. But, he said not to worry, he would get him to come around to his way of thinking. So, that made me feel better.

The peg is going to be placed tomorrow morning. I just talked to Connor and Meredith who is going to be his nurse tonight and they finally got the order for the consent form. I was planning on going early in the morning since I hadn't signed any paperwork and they didn't have a time for it on the OR schedule yet. But, I could give consent tonight over the phone, which I did. That way if I don't get there before they want to do it, there's no hold-up.

Bill was very sleepy this morning and not very responsive, but we think he's not sleeping much at night. They said sometimes vent patients only catnap, but if it gets to be a problem, they would see about getting him something mild to help him sleep.

He was placed in a breathing trial about 8 this morning. That's where the vent is set to act as a CPAP machine. He does all the breathing and since I don't know exactly how a CPAP works, that's about all I can tell you. He did fine, oxygen levels stayed up. HIs heart rate was a little high this morning and his blood pressure was low, but he hadn't had his medicine that raises his pressure. He stayed that way until 11:40 and they decided to try the trach collar again. This is the oxygen mask that goes around his neck and covers the trach. He did not do well with this Monday but today he rocked it! When I spoke to Connor a few minutes ago, he was still on the collar and all of his numbers were still good. At one time his oxygen level was 100%! He was still coughing a lot and they did have to suction it a couple of times, but he was breathing well, even fell asleep. They are planning on putting him back on the vent for the night in a bit so that he can rest. He really worked hard today!

He became more aware later in the afternoon and responded to things. Mary Rose called and I held the phone to his ear and he tried to talk. He can make a sound, but without the trach being covered with a special speaking cover, he can't really talk with it. He did figure out how to do it before and I'm sure he'll figure it out again. 

He told me he would behave tonight after I left, then grinned and shrugged his shoulders as if to say, what happens in transplant stays in transplant.

I finally got a recliner in the room and if he's still there for Christmas, and I suspect he will be since he probably won't be completely off the vent by then, or Dr. Edwards changes his mind, I'm going to stay Christmas Eve night. I said we've never been apart at Christmas and we weren't going to start now.

Mary Rose, Jack and the kids are coming for Christmas and they are bringing a small tree for the window sill of his room. We also have a few gifts to put under it, if I don't forget where I put them! So it won't be a totally barren Christmas. I've got to get the boys checks mailed to them, and Mom and Ronna, yours will come after Christmas, but I know you understand!

Chaplain Joseph stopped by this morning and wanted to make sure that I had updated this. He finds the idea of this blog fascinating for some reason. I assured him that it was up to date, that I did it either at night before bed, or first thing in the morning, but I knew that my mother would look for an update in the morning. He's a very nice man and said that he can tell that many prayers have been said for Bill and that I have been in constant prayer for him. He has come in and prayed with us and for us and just wants to make sure that we are not in need of anything.

Another good thing today, the other couple I've met got to leave today after nearly 6 months in the hospital. If his labs are good Friday they will get to go home. They also live about the same distance away as we do, just in another direction.

OK, I've updated and I've rambled some. It's just about time for me to say goodnight since I want to leave a little early for the hospital. I would like to be there before they take Bill, although it could be done bedside, but Connor didn't think that was likely. So, goodnight everyone. I may take this tomorrow so that I can update after the placement, but if there's nothing during the day, I will update at the usual time.

Tuesday, December 18, 2018

Before I get into today's happenings, I'm fine today. I went to bed at 6:45 last night and slept until the cats woke me up at 4:30. I was a little skeptical about drinking anything, but my meds went down just fine. I didn't make any coffee, just got my caffeine fix from Diet Coke. Lunch was loaded baked potato soup (which is fantastic) and 1/2 a ham and cheese problems. Also ate dinner with no problems, although I decided not to try my leftovers from yesterday. So, I'm back to normal. I also noticed that all of the coughing I did helped my shoulder. It hasn't hurt at all today.

OK, now on to today. Bill was awake and alert when I got there and watching infomercials on TV. They just hadn't changed the channel from what he was watching the day before. But, as the morning progressed, he seemed to get a little lethargic and less responsive. Another breathing trial was started, but occupational therapy came in and he needed cleaned up. The liquid feedings are giving him explosive diarrhea and of course he can't say anything so just has to wait. This one required a complete bedding change. He would probably be mortified to know that I've included that, but right now it's a fact of life.

Dr. Threlkeld did say that he was stopping all antibiotics right now, but would still be on guard. Part of the diarrhea is also due to the high powered antibiotics being used. He's still in contact isolation. I don't know when that will be lifted.

The resident came in and said that since he was only getting 1 IV drip now, he didn't see any need for the central line to be left in. He also still had a single IV site that was still good. So, he asked his nurse and they consulted with Dr. Edwards and it was decided that it could be removed and a picc line put in instead. That was done this afternoon, but when I left at 4:30 the central line had not been removed. But, Connor was going to do it when he brought his 6 pm meds.

Bill did a lot of grimacing like he was in pain, and a lot of belching and gurgling. I asked him if his belly hurt and he said yes. He also said that what he was belching and gurgling was coming from his stomach, so I think he's having a little GERD. And, when he's being suctioned, it is about the color of his food. The dietician is going to try to adjust what he's getting.

He's also developed some dermatitis from the antibiotics, so Dr. Threlkeld ordered a cream for that. It actually looked worse today than yesterday and he kept reaching for his face to scratch it. 

The main happening today was what I thought earlier. Dr. Williams recommended that he be moved to the 4th floor which is restorative care. It's for patients who are having a hard time being weaned from vents (that's one of their specialties), trach care, long term IV antibiotics, difficult pneumonias, and intense physical, occupational, and speech therapy. Except for the antibiotics, Bill meets all of these conditions. The social worker made the call and they agreed to accept him as a patient. I think that although it is in the same hospital, it is a separate hospital. But, the same drs. can see him, and if something happened, he could be moved back to transplant if necessary. His nurse and I talked about it and I think she was surprised that I was all for him being moved. I also talked with the cardiology nurse practitioner about it being what was needed.

But, it wasn't 15 minutes later, Dr. Edwards nixed the idea. He wants the peg feeding tube placed and him off the vent before he leaves ICU! The peg, OK, no big deal. But, since he's having a hard time weaning from the vent, why prevent him from moving to the unit that specializes in that! His nurse was beside herself. She kept saying I've got to keep my feelings out of this and stay professional. But I know what she meant! She also said that with the therapy he will get in ICU compared to what he would get on the 4th floor, he would be in ICU for months to get to the same level. It may still take months there, too, but I don't believe it would be as long. We were both disappointed.

Dr. King came in late and said that since Dr. Edwards wanted the peg tube done he would to it either tomorrow or Thursday. When I told him that Bill had just had an off day, he said he would just check in tomorrow and we would look to do it Thursday. It's not a difficult procedure to do and won't take a long time. The physical therapist was in the room getting ready to start therapy and after Dr. King left said "what Dr. Edwards wants, Dr. Edwards gets".

Dr. Edwards is the head of the transplant program and he's an arrogant ass. (Sorry Mom). He is the one who doesn't want any input, comment, question from family and he wants to hear nothing about the complications Bill had during and after transplant. It's like if it's not one of his transplants he doesn't want to hear anything. He refuses to contact Mayo, yet I'm sure if one of his transplants was hospitalized at another center, he would want to be notified. Anyway, I got some input from my sister on ways to handle the situation about getting him moved, so now my rant is over!

Some have been wanting to know if Bill has been told that's it's OK to let go. I told him that while he was sedated, that I would be OK and while I didn't want to let him go, I would so that he wouldn't suffer anymore. I know that Mary Rose, his oldest daughter told him that they would make sure I was OK if he was tired of fighting. Well, today he mouthed that he wanted to go home. I told him that he knew he couldn't do that right now and asked him if he was tired of it all. He said that he was, so I told him if we turned off the machine he would most likely die and asked if that was what he wanted. I also told him that it was OK with all of us, me and the kids, if that was what he wanted and he said no, he did not want to do that. So, while he's getting tired of all the poking and prodding, he's still got some fight left in him. After that he actually perked up a little and gave the therapist a smile and I got a wink or 2. He said that it was OK with him for me to go home when the time came.

I have them looking for an extra recliner for the room in case I want to stay with him. The chair I have is comfortable, but it doesn't recline, and I don't want to sleep in the waiting room, or go to a hotel. Kind of defeats the purpose of staying with him. So, Connor was going to look for 1. All but 1 of the rooms is occupied again and I wanted to get one before another patient arrived. I noticed that one of the rooms had 3! I'm planning on spending the night on Christmas Eve. We've never been apart on Christmas and I don't want to be this one either, especially since it might be the last one. I'm going to look for a very small lit tree that I can sit on the window ledge, and we do have a couple of presents to open. So, we'll have our own little Christmas.

That's it for today. The wild cat is running from the foyer through the living room and sliding into the dining room, so I need to see just what has been banging around in places and then get ready for bed. I've found that leaving around 6 in the morning is just about the perfect time as far as traffic goes in the morning, and I get a great parking place usually. Plus, Dr. Threlkeld makes his rounds early. He doesn't round with "the group". Whatever the cat has now sounds heavy, so better go! More tomorrow!

Monday, December 17, 2018

Here's the rest of what went on today before I came home. They tried using the trach collar, which is just a special mask that connects to a hose. It goes around his neck and covers the trach and that's how he breathes. He did not do really well. Again, the oxygen had to be turned up to 15 and, while his sats were OK in the mid 90s, they started to drop and he kept mouthing help me. So, after about 15 minutes he was put back on the vent.

The gastro dr. came in and said that Bill is maintaining what he needs with the ng tube and, in his opinion, the peg didn't have to be done while he was still in ICU, and he's, according to what this dr. apparently read, is going to be there for awhile. I'm sure that's it's until he can get off the vent.

He slept for awhile and when he woke up he was still alert. He needed to be cleaned up again and while that was happening I went to get some lunch. I ate 2 bites and unfortunately for me, my throat did it's thing where it wouldn't let me swallow the food. When I got back upstairs I was spending more time in the bathroom coughing everything up than in with Bill, and since he is still in isolation, it was gown on, gown off and in the trash, gown on, gown off and in the trash. I checked with his nurse and she said they weren't planning on doing anything major this afternoon. She thought they were just going to leave him on the vent instead of doing another trial, so I told her I was coming home. I still can't eat or drink anything, although I just had the hiccups which usually helps. 

I asked Bill if I could leave and told him why and he said it was OK. I also told him no wild parties or dancing girls, and since Caleb was his aide today they had better not get into trouble. And, I hadn't even left the unit and his vent started alarming. He was just trying to cough which causes it to alarm.

That's how the day has gone. I feel exhausted and really wished at one time that I had Bill's little suction device to suction this stuff out. I'm hungry and thirsty (not even liquids are going down), and I had really hoped that the procedure I had done in October would last longer than 2 months. The strange thing about this condition is that once the spasms stop, the same food that caused it to begin with may not have any affect the next time.

Mom, we got the package today. Do I HAVE to share? Thank you for the goodies and the gift card.

I'll update again tomorrow. I don't know if I will take the computer or not, I'll decide in the morning. 
It has taken awhile to get the computer to work today. It updated and the gremlins have arrived. I'm at the hospital and the internet here is spotty at best, so hopefully I'll get this updated before I lose it completely.

Bill was more alert yesterday, but very gurgly again. He actually said 2 phrases "oh man" and "wow". Now he's not supposed to be able to speak with the trach unless he has a speaking device in, but, he managed to do it before and he's figured out how again. Actually, they think the inner collar is slipping some which could let him speak.

He was really fighting the vent yesterday, over breathing it a lot, but the respiratory tech said that the collar was fully inflated. They were suctioning thicker secretions yesterday than the day before and his nurse checked to see if he could be given something to just calm him down a little. 

Dr. Williams decided that he would do another bronchoscopy since the secretions had thickened some before trying the breathing trial and the trach collar that oxygen is attached to.

It seemed like voices agitated him so we tried to be as quiet as possible in the room. We kept it pretty dark and he did finally rest some.

When Monica, Dr. Williams nurse, came in she added some air to the collar again and all of the gurgles stopped. She said it must have a small leak, or it was positional, meaning that when his head was turned certain ways, it would slide some.

The bronchoscopy was done late in the afternoon and didn't take long at all. I went down to get a drink when they were getting ready to sedate him and when I came back up, it was over and he was getting cleaned up. Dr. Williams said he wasn't too junky and he like gurgles. That tells him that any secretions such as saliva, are not getting past the trach. So, I'll have to tell Bill that gurgles are good.

So, that's the update for yesterday. And, while I'm here, I may as well update from this morning.

He's very alert this morning and answering questions and responding to commands. He's been in a breathing trial for quite a while now and Dr. Williams was just in and wants him in a chair! And he wants physical therapy to really start working with him. I told his nurse that if she can't find the stroke chair to put him in (it has a seatbelt) and he really needs that kind of chair instead of the one I'm in, therapy can put the bed into a chair mode like they did the other day.

The social worker is working on something today that Dr. Williams thinks he's a good candidate for and I think I may know what it is. Bill is beyond what skilled nursing can do, with the vent, trach, feeding tube and needing intense therapy. I was looking for Acute Care/Specialty Hospitals yesterday and, the entire 4th floor of this hospital is Restorative Care. It's a speciality hospital that, even though it is in this hospital, it is a separate entity. It is for patients who are having difficulty being weaned from vents, complex lung problems, and it offers intense physical, occupational, and speech therapy, all of which he will need. Why did they not say anything about it before? Instead, they put him through hell by sending him to that place that shall remain nameless! Maybe if he had just gone there, he wouldn't be in this position now. But, there's no point in thinking about that because it is over and done and can't be changed. 

That's what's gone on so far today. I'll update more later when I know more. Oh yeah, I don't know if they are going to do the peg feeding tube today or just get it on the schedule to get it done. That dr. hasn't been in yet. When I find out, you'll find out!

Saturday, December 15, 2018

Here is the continuation of yesterday's post...and today's included. 

Yesterday...Dr. Threlkeld was thrilled to see Bill awake and aware yesterday morning. He thinks he's still on the right track with the meds, and it's just going to take some time to get his strength back. He said for every day in bed, it takes 2 days to recover. So, since it will be 2 weeks tomorrow that he was airlifted, well, you can do the math. He will have a very long road. 

Dr. Morris said his kidneys are functioning perfectly now and he's mainly monitoring for electrolytes and hydration. He adds some fluid, takes away some fluid, adds meds, reduces or eliminates meds, all a big balancing act.

Dr. French came by and we've decided to have the peg feeding tube placed Monday, after seeing how he does over the week-end with the breathing trials.

All of the drs. who listened to Bill said that his lungs sounded clear, but Kim, one of the nurse practitioners for cardiology said he still sounded congested.

But, as I said in the previous post, Bill responded to questions, winked, was very engaged in everything going on around him. He was very focused on the people in the room and tracked different voices around the room.

Also as I said, he still hadn't been switched to the oxygen before I left, but after 12 hours, I needed to leave. Dark, rain, and exhaustion don't make for the best driving conditions and I needed to stop for cat food before getting to the house.

Now for today...I got to the hospital a little later than normal. Since it was Saturday, I left later, knowing traffic would be lighter. When I got to his room, he was just getting cleaned up from using the bathroom. But, his numbers were terrible. He was gasping for air, his heart rate was extremely high, his oxygen sats were low. His blood pressure was normal, but the higher range of normal. His nurse came out as I was gowning up and told the nurse manager on duty to call Dr. Williams to see what he wanted to do. As we were all trying to calm Bill, Sara came in and said that Dr. Williams said to put him back on the vent and the respiratory therapist came in and set it. He was suctioned several times, and instead of the thick mucus they had been getting, it was very thin. But as soon as he was suctioned, he was sounding all gurgly again.

Dr. Threlkeld's nurse Janet, who we've seen before in the office, came in and when she listened to him she said it sounded like everything she was hearing was coming from above the trach, so just at the base of the throat. She also said his collar could use a little air. The insert a little balloon to keep the inner collar tight. She took an empty syringe and injected 1cc of air. The gurgling was immediately gone! Why didn't the respiratory therapist do that? Or the other nurses for that matter? His breathing instantly slowed to normal, and his heart rate normalized and his O2 sat hit the mid 90s. Such a simple fix. She thought that the trial was probably too long yesterday and just really wore him out. 

In watching him, he was not engaged with what was going on around him and was staring mostly at the ceiling, opening his eyes very wide. He was also grimacing a lot like he was in pain. I stood over him and talked to him until he focused on me and then we covered every part of his body, but he denied any pain anywhere. 

Because he's having very loose stools I thought that maybe the "food" was upsetting his stomach some. He can't drink Boost or Ensure because he gets immediate stomach cramps. I didn't remember that bothering him before, so I started looking back over the blog to see and I couldn't find anything.

When Dr. Williams came in I said something about 2 steps forward and 1 step back and he said that the order to put him on oxygen and then back on the vent was not carried out and he intimated that whatever respiratory tech was responsible was really in trouble. It turned out that Bill stayed in trial mode all night! He was never put back on the vent so that he could rest during the night! Dr. Williams said the plan now was to keep him on the vent for today and tonight so that he could recover and that he was going to give specific, explicit instructions for tomorrow. Of course, this set weaning him off the vent completely back by a full day. And Dr. French, the GI doctor, wanted to see if he could be weaned this week-end before placing the peg for the feeds. 

I talked to Mary Rose this evening and she said that the respiratory tech was not the only one responsible, the nursing staff should have seen that he was not on the vent. They are not allowed to set the vent, but they can see if it is set for X number of respirations or if that space is blank. I can tell if the vent is on as a vent or not! So, I need to ask lots of questions tomorrow. The case manager/nurse manager won't be in until Monday. I also want to know if he had been given any pain medication in the night. They have done that before, and just say that he looked like he was in pain. I suspect he may have been given something since he wasn't as focused or engaged.

I will be going early tomorrow so that I'm there if they decided to start the trial early. I don't remember if the drs. rounded on week-ends or not, and I suspect not because they round at 9 and I was there before 9 this morning and don't remember seeing them.

I think I've covered everything. I feel so bad that it was so traumatic for him when it didn't have to be. But, at the same time, I'm not blaming myself. His room is one of the smallest ones in the unit and there's no room for a recliner, so I can't be in the room all night sleeping in a straight backed chair. My shoulder/arm is just now not hurting continually. The blame lays directly with the staff. I will definitely say something when the right people are there. 

I think that covers everything from the last 2 days. I'll let you know what happens tomorrow! Now, I'd better get my clothes in the dryer so they'll be dry in the morning . Goodnight!

For now this post is going to be short and sweet. I think I'm taking my laptop to the hospital today. The internet here at home has been up and down all morning and yesterday was a big day.

The gist of it is....from 9:40 am until after I left last night at 6:30, Bill had been in a breathing trial and breathing on his own! The vent was used as a CPAP machine, keeping airflow, but the actually act of breathing was all Bill. He did so well. The only problems he had were when he couldn't cough hard enough to move the secretions, especially after they turned him. But, after getting a little suction, his numbers would bounce back. His blood pressure and heart rate were tolerating the trial quite well.

The plan was to place him on just oxygen until 9 last night to see how he did and then turn the vent back on, as a vent through the night so that he didn't get into any trouble. But, for some reason there was a snafu of some kind and it still hadn't been done when I left. I told him I trusted the nurses to make sure he didn't have any problems. I also told him there were to be no wild parties or dancing girls and he just smiled really big and shook his head, meaning of course there would be no parties with dancing girls, wink wink. For those of you who actually know Bill, this is a sign that he's coming back. He winked at everyone yesterday and tried to mouth some words. He told me "Morning" when we got there and he told Mary Rose "home", whether he meant he wanted to go home, or he wanted her to go home, we don't know. He also said OK and he was pointing at all the tubes, so today we're going to talk about what has happened.

That's the main event from yesterday. I'll do another post with all of the ins and outs of things later. For now I need to pack up and go. It's an hour later than I normally leave, but it's also Saturday so there should be less traffic, even though it's raining. I need to stop and get gas before hitting the highway and get my backpack repacked. So, until the next update...

Thursday, December 13, 2018

I'm really tired tonight and the last 2 days have been pretty eventful. I'll try to get it all down, without making it really long, yet try not to skip anything. That will be hard to do!

The decision was made yesterday morning to go ahead and do the tracheostomy. It was done about 11 and everything went find. Because they used a combination of drugs to paralyze Bill during the procedure, they did not try to lift the sedation too soon. It was probably about 4 when they started to wake him up.

It took quite awhile before he finally focused on my voice and tracked to where I was. He was still in and out most of the evening until we left for dinner. I say we because his daughter Aimee and her husband Lee arrived in the morning. We checked into the hotel later that afternoon and then met Ryan, Amanda and Daemon, Emily and Bryan, and Mary-Rose, Jack, William, and Petra. We tried to just order pizza and eat in the lobby of the hotel, but found that no place would deliver to the hotel. They will deliver across the street to the hospital, but not the hotel. There is a Wendy's within walking distance so we went there for dinner. Afterwards we met back in the lobby for a mini family meeting.  The main issue we needed to talk about was changing from the nasal gastric feeding tube to the peg tube that goes directly to the stomach. He had one of those after the transplant and hated it. The dr. Aimee and I talked to went over all of the risks and the fact that if there was a problem, he is too weak to undergo a surgery to correct any problem. We think he will probably need to have it, but we want to see if he can be weaned from the vent first. (More on this later). We also nixed the idea of hospice, unless it was absolutely necessary, and we won't know that until he wakes up completely. We then talked about the culpability of the nursing home and the contribution it made to the deterioration of his condition in a matter of 2 days. After agreement all around, the local families headed home, and I took Mary-Rose, Jack and the kids to the hospital as they hadn't been there yet. Bill was still awake, but had been given some pain medication, so wasn't quite as aware of us being there as he had been before.

This morning I went to the hospital fairly early and was there when Dr. Threlkeld got there. He was very surprised to see Bill awake and following with his eyes. He still thinks we are on the right track with the antibiotics and thinks that the trach will definitely help in his recovery. I also noticed that all of the maintenance drugs, the Isoprel for his heart rate and the Propofol for sedation had been removed. He now only gets an IV for some of his meds and of course the antibiotics. I got a huge gift from him today...a wink! He usually reserves his winks for everyone but me. I get the glares and cut away eyes, but not today.

Physical therapy came in and did some range of motion exercises with him. They were pleased at his responses to commands to wiggle and squeeze. The maneuvered his bed into a position that almost resembled a recliner, yet he was sitting almost straight up. He stayed in that position all morning and was able to hold his head up some and it also let him cough some to try to clear the secretions. He continued to track and look around and he would try to get my attention by opening his eyes really wide and raise his eyebrows. He wanted to talk a lot but his mouth is still really swollen from the biter bar and of course he doesn't have his teeth in, so it's hard to lip read. But, he's been swallowing, which is going to be a determining factor for the feeding tube.

The GI dr. came in again and we came to the decision to wait until Monday before doing the peg. We're going to let him get through the week-end and let his lungs recover some before doing it. Mary Rose asked him very plainly if it was OK if we did this, explaining why, and he very emphatically, in front of the dr., nodded his head. The dr. had said it wasn't an emergency situation to get it done tomorrow, so waiting to see if he could be weaned from the vent in the next few days seemed like the thing to do.

Dr. Williams came in and listened and watched and then said that tomorrow they can start the breathing trials again. It should be easier on him this time. So, I'll be going early again, but I'm picking Mary Rose up on the way to the hospital. 

I came home later than usual, but earlier than I had planned. I'm glad I did because once I was home, I really got tired. It was rainy on the way home, and of course dark and those are my least favorite conditions to drive in.  

So, I think I've covered everything. Progress has been made and I think, as before, Bill is going to surprise everyone again. I'll update again after tomorrow's breathing test. Until then, I'm going to bed!

Tuesday, December 11, 2018

I took notes today, I really did. But, I'm too warm and snuggled into my robe to get up and dig through my backpack to get the notebook, sit back with my laptop, turn on the light, and read what I wrote. So, instead I'm sitting here rocking and I'm going to wing it. It actually won't be too hard to do.

Bill was stable most of the day. His nurse Kellye said she had suctioned a bunch of nasty stuff before I got there and, in her opinion, he needed another broncoscopy. I told her that they were talking tracheotomy and she said that had been mentioned. But, nothing had been concerned and she was going to ask pulmonology when they rounded this morning.

Dr. Threlkeld said we were definitely on the right track with the antibiotics and he believed in cheating and playing dirty when it was for a good cause. He said he sounded good, but he always sounds better than his x-rays indicate.

The GI doctor, and I think he said his name was Dr. French, said that his blood count had come up nicely with the unit of blood he had received the other day and they would just continue to monitor, as there was really nothing to indicate putting him through and endoscopy since they couldn't identify an active bleed anywhere.

Kellye did ask Dr. Munday what he thought about doing the bronch and he agreed after looking at his x-ray that he needed one. It was done this afternoon and again, he cleaned a lot of junk out. I know they were sending some samples to the lab again as I went back to his room just as they got him settled down again and the respiratory therapists were just leaving. The plan now was to let him rest the remainder of the day and then try tomorrow to extubate. If they can't extubate by Friday, then we are probably looking at a trach. It doesn't mean that it will be permanent. He had one after the transplant that they thought would be permanent and he had it 2 days short of a month. I told Dr. Munday that I was not opposed to it.

I left shortly after that as he was still sedated and would be through the night. As I was leaving I did get some sad news. The man in the room next to Bill has been extremely sick now and as I was telling the staff that I was leaving for the day his wife came out and told me that all of his lines were being pulled and turned off today. She said they had talked about it before he got to this point and the children were all in agreement that this is what he would have wanted. My heart broke for her, maybe because it really hit a little too close to home. She said that while she was sad, she was at peace with the decision. 

Bill's girls are arriving tomorrow and I'm going to stay in Memphis again tomorrow night. Emily and Bryan and Ryan and Amanda are coming down when Em and Bryan get off work and we are going to have a family meeting. I've told them that while I want to hear their opinions and ideas, the final decision will be mine. I know Em, Ryan and Mary Rose have all said they will support whatever I decide. Harris has said that he trusts me to do what is best for Bill and, even though Aimee hasn't said anything, I don't anticipate any problems there. I still haven't heard anything from Joe or John. I'm not anticipating having to make any major decisions tomorrow night, but at least we will know where we all stand.

So, that's it. It was so quiet today that I actually sat and dozed some. Kellye said they needed to find a recliner for me but I told here there was really no room for one. I was propping my head on my hand and she could see me from the desk and was afraid that I would fall out of the chair! I told her that I was never that deep asleep and was aware of everything going on. Story of my life for the last 20 years!

We got the bill from the flight yesterday...$46,736.60! Luckily we have a membership and a pilot told me that they have to accept whatever Medicare pays as payment in full. He said the memberships are really only beneficial for people who are not covered by Medicare. But, I willed it out and have it ready to mail back to them. I remember with the first flight he took with heart attack #2 it was a mere $10,000! And that was 20 years ago.

All for tonight. I'm not sure if I'm taking my laptop tomorrow, it depends how light I can pack up. I don't want to take an actual suitcase so it may take some creative packing. But, if there's not an update tomorrow night or Thursday morning, you'll know that I didn't take it and it will be updated when I get back home. And with that, I'm going to bed! Goodnight!