An early post today and it will be short and sweet. I'm not feeling well so came home early. Felt good when I left this morning, but as I got closer to Memphis, I started to feel bad. It could just be that I'm tired, but who knows.

Anyway, Bill ate a little more than 1/2 his breakfast and I gave him 1 of his drinks before I left. Dr. Threlkeld came by and said he's moving good air and his white count is at 10, which is the high point of normal. It was 9.2 yesterday, so it's gone up a little. He thinks that a normal for Bill will be between 10 and 15. He's going to keep watching through the week-end to make sure it doesn't start creeping up again.

Cindy came by and said to just keep getting better. His oxygen level was the same as yesterday and she wanted him to make sure he got into his chair today. 

I talked to his nurse before I left and I'm pretty sure she'll have him get up if she hasn't already. She's one we've had several times before so she's getting to know him and his moods.

That's it for today. I'm not going to do anything other than relax all day. There is so much I could be doing in the house but it can wait. The only "thing" I'm going to do is cook myself some dinner tonight instead of eating frozen or picking something up. I'll finish up my dinner from last night for lunch, if and when I get hungry.

Hopefully tomorrow will be a better day, at least for me.  If you're a Black Friday shopper like my daughter and granddaughters, I hope you've had fun today. If you aren't, like me, I hope you have a great day!

I hope everyone has enjoyed a good day, whether you ate a huge dinner with loved ones, hot dogs because that was what you could afford, or the "holiday dinner" at the hospital like I did. But, it was a good day and we were together and that's all that matters.

Yesterday started with an almost flat tire. Leaving at 6 am means that there is no repair place open. I came back home (only got down the block when the low tire light came one) and was going to just add air, but then thought that it was fine the  day before so something had to cause it to lose half of the amount it should have. The nearest tire shop is where I bought the tires and the manager is a personal friend and I knew he would get me going as soon as they opened...at 7:30. So, as I was sitting in the parking lot waiting for them to open (at 6:30, and yes my doors were locked) I remembered the gas station down the road, one of the few that doesn't have a convenience store attached. I googled them and lo and behold, it said they opened at 6:30! The owner was unlocking the door as I pulled in. I gave him and his employee a bit to get things turned on and set up before going in. Within 20 minutes and only $17, an ugly broken screw was taken out of the tire and a plug put in and I was on the road.

Bill's breakfast tray was still in his room and it was empty! He had eaten all of his breakfast for the first time since he's been there! He was sipping on his coffee and just looked and seemed better. I had missed the pulmonary doctor, but his oxygen was set on 4! Of course he hadn't been out of bed yet so we didn't know what would happen when he did get up.

Dr. Threlkeld wants to watch for a couple of days to see how he does without any antibiotics. He didn't sound as congested when he talked, although his ears are still full.

When therapy came in I was on the phone so left the room but talked to the therapist when it was over. He walked to his chair, did his exercises, and walked 20 feet in the room. But, he also had a big attitude change. He complained about everything, his ears, his neck hurt, his arm hurt, his butt and back hurt, everything. Because he worked himself into a state, his oxygen had to be increased. But, his sugar has been stable for 3 days, so apparently the right amount of insulin has been found. He turned into a pouty little boy when I told him he had to eat more of his spaghetti before he could eat his pudding and he absolutely refused to eat anything then. After about 30 minutes I finally gave in and told him to eat the pudding. He perked up a little then of course.

His nurse yesterday was one from ICU that he had had before so he explained everything that they had done before I got there and was very attentive. I've noticed that since the ICU nurses are rotating because of the remodeling of the unit, that the care is more personalized when he has one of them. Not that there's anything wrong with the regular step-down nurses, they are all good. But since step-down is the step before going home, they expect the patient to do a little more on their own. 

This morning he was awake and wanting coffee when I got there, so I got him a cup from the nutrition room. Cindy popped in and said he was still moving in the right direction. His oxygen was on 4 1/2 (they had to bump it up some yesterday after I left). I need to check with our supplier to see if they have a concentrator that goes higher than 5 liters. I don't like the idea that he would be on the highest level and get into some trouble and I can't increase it. I can always add a tank as the EMT told me, but to me that just doesn't seem like the best solution. So, I'll talk to Jeryn Monday.

He ate most of his breakfast. It looked like he got about 6 eggs worth of scrambled eggs, plus a blueberry muffin and a bowl of oatmeal. He ate almost all of the oatmeal, 1/2 the muffin and made a dent in the eggs, so I was pleased with that. His nurse today, Emily, said she thinks he eats better when I'm there, but I think it's just the opposite. He's been telling me that he's eating his dinner since it comes after I leave, but I'm not sure that he is. She told me tonight that she's going to see if she can get him to drink one of his shakes this evening. And on the way home I started thinking that he's been drinking one of those in the afternoon and may not be hungry by dinner so he may not be eating. I guess I'll find out tomorrow.

His sugar had dropped really low in the night so he got a jolt of orange juice. Dr. Oktied changed his insulin again. He tried just long acting, but by lunch today his sugar was over 200, so he added back in the coverage before meals, just lowered the amount.

When Tom from pulmonology came in he said they were able to get a sputum sample finally last night! Of course with the holiday, there will be a delay in the results. But, he said he only heard a small area of congestion in the upper left but nothing anywhere else like he had heard before, so he was really pleased. He said the plan now is to try to get his sats to stay stable at the lower rate and we are looking at discharge the first part of next week! 

I've noticed that once Bill gets into his chair, he soon becomes the pitiful patient again and wants to go back to bed. I made him stay up 3 hours today and we talked about how he's not going to stay in bed all day when he gets home. 

That pretty much gets you caught up. I don't know what the schedule will be tomorrow as far as therapy goes, or if they will still be off. But, I'll update when I get home, or Saturday morning. 

Enjoy the rest of your holiday!

Happy Thanksgiving everyone!

I was tired last night, so I'll do a double post tonight. I hope everyone has a great day with family and friends, no matter where you celebrate!

See you tonight!

Well, they decided not to do the bronchoscopy and it does make sense. The x-ray didn't look any different than the one done on the 21st. But, listening to his lungs, the lower lungs are clearer and all of the congestion is not in the upper airways so the bronch wouldn't have any benefit. You can tell just how congested he is by his voice. He also says that his ears are stopped up and I can tell that by the volume of the TV! They are continuing the shaky vest and after 3 tries, the order finally showed up with respiratory for a new medicine for his breathing treatments. Now the treatments are 15-20 minutes instead of 7 minutes. They are making him cough some, but he still can't get it to come out. And, part of that could just be habit now of swallowing whatever has come to the back of his throat.

He had his final IV of antibiotic today and now they are just going to watch and see if the bacteria activates again. Since they think he is aspirating some in the night, we've got to come up with something other than adding a wedge to prop him up to prevent this. We also need to, at some point, find out what we can do to keep him out of the hospital. So, some brainstorming with the drs. will have to be done before he is discharged, or he'll be right back in about 2 weeks after he comes home.

His oxygen level dropped for no reason this afternoon after his breathing treatment. When I came back from getting something for lunch his nurse told me that when she checked his oxygen, it was in the low 80s and she had to raise his flow to 10 liters before it started coming up. She left him at 7 liters when he finally got to 90%. He didn't want his lunch, but he had finished a Glucerna shake about an hour before it came, so it was understandable. We left the tray in his room in case he got hungry, but all he ate was his ice cream.

I came home really early today. We're expecting some severe weather tonight and I didn't want to be caught out on the highway in something. I just talked to Bill and he said he ate most of his supper. He said it was some kind of meat without a bone in it and some greens and chocolate pudding. So I'll have to look at his menu when I get there in the morning. He also said therapy came in and got him to his chair and watched him do his exercises. I'm not sure if he did any walking in the room or not, he was unclear about that. He just said he didn't leave the room.

His breakfast was messed up again this morning. He had exactly what he had yesterday except for the toast and he was supposed to get pancakes. They also didn't give him any coffee or milk, but did give him apple juice which really raises his blood sugar. I got him some coffee from the nutrition room and could have gotten milk if he wanted it. I should have taken away the juice, but decided to let him have it.

I think I've hit the highlights. We're getting into that holding pattern where not a lot is happening. I suppose something could be done yet with his lungs, but for now I think it's continue as is and just work on reducing his shortness of breath and his oxygen flow so that it's at a home level.

I'm glad I'm doing this tonight, now I won't have to rush around in the morning! Hope everyone has a good night!

A decision will be made today about a bronchoscopy! They are doing another chest x-ray this morning and then will evaluate. He really needs one, even I can tell that. The other treatments of the shaky vest/percussion are not working. But, more on that in a minute.

Yesterday started out well, but that only lasted until lunchtime. And I can't pinpoint any one thing that triggered it. I think it all really comes down to interrupted meals and commotion.

Bill was in a very good mood when I got there. He was still in bed with a fresh cup of coffee waiting for breakfast. When his tray finally came, they have been really running late for the last few days, it was a smaller breakfast and I was confident he could eat it all, scrambled eggs, 1 sausage link and 1 piece of toast, milk and coffee. They have now changed his diet from healthy heart/diabetic to regular/diabetic which means he's getting salt added. Luckily he knows not to use it. There was also no Glucerna again, but he still had 3 cartons in the fridge. He had just started eating when Emily brought all of his pills and inhalers and shots. She's a very good nurse, just runs behind a lot. He finally ate his sausage, most of the egg but no toast, so I was good with that.

Got his meds in and the doctors started. Tom from pulmonary came in with the news that they will now seriously consider the bronch. We talked about how his throat muscles are weak from all the time spent on the vent and he said that they are fatigued and that was good to know. I was pretty happy that we were finally going to get somewhere, hopefully. Again, cardiology said from their standpoint it's just get his breathing better, endo says the insulin combination has finally levelized his glucose and dietary is monitoring his intake. I told her that his appetite had started to come back some, which was going to turn into a lie, but at the time, he had improved.

The only hitch in the entire morning was that his sats were staying low again. They are trying so hard to get his oxygen flow reduced to a home level, and he's just not cooperating! Not that he doesn't want to, he's just not breathing well on the lower flow, only staying in the mid 80s. One thing that doesn't make sense to the medical people is how he is not dizzy or passing out when it drops. My theory, and again, what do I know I'm just his wife, is that his body has adapted to it and accepts it instead of it sending him into panic mode of not being able to breathe. I'm beginning to wonder if his body is not just redirecting the oxygen to the crucial functions of his body.

When they bought his lunch in, Emily arrived to hang his antibiotic, respiratory came (and hour late) for a breathing treatment/shaky vest treatment, and when that was done, I had just taken the cover off his plate when physical therapy showed up. I sent them away. I cut his BBQ chicken sandwich in half and told him he had to eat at least half of it. Then I sat and watched out of the corner of my eye...1 kernel of corn at a time, followed by a drink of tea. When he said he was full he hadn't touched the sandwich and I told him to eat it. He ate a bit of it and then reached for his pudding. It told him to keep eating the sandwich. He finally finished half of it and then therapy was back, so he got ticked and wouldn't even attempt to eat his pudding then.

He told them he didn't feel like walking, can't blame him since he had barely swallowed his lunch, and when he sat up his sats dropped really low. We discovered that respiratory had only put his flow at 4 1/2 instead of 6. So bumped it up and finally cajoled him into getting into his chair. He half-heartedly did his leg exercises, but he did them. He stayed in his chair for most of the afternoon, but we didn't have any other doctors come in. We also discovered then that he was constipated again, even on the stool softeners. Counting back days, he had not gone since the day that he had so much trouble. We were hoping that it just hadn't been charted, but nope, it was 4 days. Now, I know he's not eating much, but he should still be going. He's still getting the stool softener but it doesn't seem to be working as it should because he had a terrible time.

I left shortly after he got into bed after that. I tried to get him to stay in his chair until after dinner, but he was sore by then. When I talked to him he said he had eaten most of his dinner.

Hopefully we will get the answer we want about the bronch today. I rarely see the lung dr., just the PA Tom, because he's another one that rounds late and I'm usually gone by the time he comes around. I haven't yet formulated a plan on how to proceed if they still don't want to do it. Yes, it's invasive, but it is not major surgery and he is not even put completely out. They usually use Versed to get a twilight sleep and he has been basically awake for them before.

So, my time to leave is fast approaching so I must get dressed. I'm glad I stopped and got gas when I got to town last night and all I need to do is throw some clothes on and grab my breakfast and get it into my little cooler and hit the road. I may try to update this on my tablet if they do the bronch. Keep your fingers crossed!

Yesterday was a much better day! Bill was in his chair waiting for breakfast when I got there. I thought he would have finished eating by then because I left much later than usual since it was Sunday. But, breakfast was late for some reason, and then it was really messed up. He was supposed to get scrambled eggs, French toast and a banana, along with his Glucerna. Instead he got scrambled eggs and grits. He doesn't like grits much, but I told him to put some sweetener and milk on it and have it like Cream of Wheat and he did. He ate about 1/2 of it, and half of his eggs. He's still wanting to drink more than eat. I don't know if the meds are drying him out, although they are the same meds as home, or what it is. I told the food service woman about the missing Glucerna when she picked up the tray and she told me she would bring extra at lunch.

After breakfast, he got a bath and he tried to shave, got most of it, but now has a lovely goatee, and then we watch TV. The cardiology nurse said from their standpoint there wasn't anything to do except monitor his meds. She again questioned why they were not going to do a bronch since we were at day 9 waiting for a sputum sample. The pulmonology nurse said she was going to look through everything and asked if he was still getting his breathing treatments and using the shaky vest. They both said that the antibiotics were continuing.

Respiratory came in with a breathing treatment and a vest treatment, although she cheated on it and only ran it for 5 minutes instead 10. Bill was glad that it was shorter but I don't know how much good it did in the shorter time. And then PT arrived. He worked really hard with Ethan, doing all of the leg exercises and walked to the bathroom and back twice. He did turn his oxygen up to 9 liters while he was exercising and he didn't drop as low and recovered nicely. He told him to keep doing the exercises at least 3 times a day. We'll see how that goes.

I noticed that his oxygen was at 7 when I got there instead of 6 and I asked his nurse Whitney when it was raised. She said she did it when she got him up because his sats were staying in the mid 80s. But, she was going to start cutting back again now that all of the moving around was done.

He ate better at lunch, almost 1/2 of a chicken breast/wing and most of his mac and cheese. Didn't much of his greens, but he doesn't like them anyway. And of course his chocolate pudding. There were 4 cartons of Glucerna, so I got some stickers and put them in the fridge in the nutrition room, 2 in the fridge and 2 in the freezer. About 2:30 I asked him if he would like one and he said yes so I got him 1 of the frozen ones and he sucked it down! He said they taste pretty good. I did move the other one in the freezer to the fridge since I didn't want it frozen solid and told him if he wanted a snack in the evening to let his nurse know they were there.

When he called me later in the evening, he said he had eaten all of his dinner which was supposed to be beef stew. I did notice during lunch when he said that he was full and he hadn't eaten any chicken I told him he had to eat and cut his chicken apart for him. Then he kept giving me the side-eye to see if I was watching him. He would take a small bite and then look to see if I was paying attention. Pretending to ignore him, I watched him eat most of it. Just like a little kid!

I'm hoping today will bring some decisions on doing the bronch. He really needs cleaned out. He is coughing so the stuff is moving, but his throat muscles are weak from all the time he spent on the vent during the transplant and again this last time. And, although they are stronger from speech therapy, they may never be strong enough to really get a good cough to be expelled. But, what do I know, I'm only his wife!

So, a better day. And I ended up in a better mood. Yesterday morning I felt like I could burst into tears if anyone looked at me sideways, but I worked myself out of that. Bill being in a better mood, and seeming to just feel better helped.

Now, I really have to scramble. I have to leave in 12 minutes and as usual, I'm in pjs and robe still. Until the next time...

Yesterday was not a good day again. Bill is getting tired of being in the hospital, but he doesn't feel well enough yet to be able to come home. I haven't asked about his white count numbers but you can hear that he's still very congested. They have been using the vest/percussion machine. Yesterday, it changed rhythmns when it hadn't before. It still didn't do much good. He still coughs but he doesn't get it up far enough to get it out. I wonder if anyone but me has taken into consideration all the time he spent on the vent weakened his throat muscles to the point he CAN'T use them to bring the junk out.

His nurse Emily wondered yesterday why they just don't go ahead and bronch him. She also wondered why we weren't seeing "their" pulmonologists. They are the ones we usually see in the hospital. I told her I didn't know but we saw the current group out of the hospital. I was actually considering switching to the other group since they knew more about Bill's condition, but now I guess it will be a moot point since both groups have seen him.

One thing that he did say, and I'd noticed it the past couple of days, is that his ears are stopped up. I could tell by the TV volume. I told him last night to tell his nurse when he/she came back in but whether he did or not I don't know. But since he sounds so congested, even in the voice, maybe just getting some nasal saline would help with that.

He napped off and on yesterday morning after breakfast. He didn't do very well eating it and part of it was his favorite breakfast...cheerios with a banana. They did bring a carton of Glucerna and I knew he wouldn't drink it along with his meal, so we put one of his stickers on it and put it in the fridge in the nutrition room. I finally talked him into getting into his chair for lunch. He was going to have visitors in the afternoon and he agreed. He also didn't eat much lunch. About 2 I got him the bottle of Glucerna and asked if he could have a small glass of Diet Coke. He did drink most of the Glucerna and may have finally finished it after I left. But, it was nearly gone then.

He again told me he ate all of his dinner when we talked last night, or most of it. He said they didn't say anything to him about not eating it when they took it away. But, the food service people wouldn't say anything, they just ask if he's finished.

Dr. Shirwany came in and said things will just continue as they are. Janet from Dr. Threlkeld's office came in and said that the IV antibiotic will continue and I think those were the only two I saw. But, weekends are slower. 

Brianna and David came for a bit in the afternoon and it was just long enough. About 2:45 Bill wanted to go back to bed and since he had been up since 11:30, that was a good time upright. He made the comment that he was tired of sitting so I reminded him that all he would do at home was sit, but we agreed that our furniture is more comfortable! I left shortly after the kids did.

Bill had been telling me all morning that I should go home instead of sitting there with him. That is not like him at all. He usually wants me there all the time. Maybe it's because he can talk this time, unlike last year when he had the vent and then the trach. But, even when he was vocal other times, he would want me there. So I left a little after 3. It was a cold wet day still. And while there was very little traffic in the morning, yesterday afternoon was a different story. Lots of truck traffic and dangerous drivers. To some it seems like when the roads are bad they have to prove how well they can drive by either flying down the road cutting in and out of traffic, or slowing down for the wet conditions so much that they are a danger to other drivers, especially when they do it in the "fast lanes". But, made it home safely  only to discover I was out of dry cat food, so off to the store.

So, there you have it. You can probably tell that we are both getting a little discouraged and, if I'm totally honest, a little depressed. Maybe after the week-end when things pick up again something will be decided. I'll update after today's adventures!

After the terrible day Thursday, yesterday was much better. Bill was in a better frame of mind and actually ate most of his breakfast. It wasn't a lot, so maybe Mary did say something. He had a scrambled egg, 2 wedges of french toast and a small bowl of yogurt. He ate most of the egg, all but 2 bites of the french toast and none of the yogurt, but he doesn't like yogurt anyway. He also drank his coffee and milk.

The morning was very busy. We saw all but 1 doctor before noon! Dr. Threlkeld is happy with the way he has responded to the antibiotic. That course is almost finished and then he said we would talk about what to do about going forward. I told him we've got to break this cycle of 10 days in/10 days out and he agreed.

I asked Cindy if she knew Dr. Kirby and when I described him, she said there is a Dr. Curry with the lung group that fit that description. I did find him then, but there was no picture. So, a little more googling and there he was! But more on him later. When Bill was getting his morning meds, his Calcium had been discontinued so I asked Cindy if she knew why. His labs showed that it was within normal range and not too high so she said she would check into it. At lunch he got a calcium tablet, so she must have ordered it back. She did say that Mayo did want the Bactrim included in his meds, so it's still there. I guess when the pharmacy folks said they wanted to talk to Mayo, they followed through! Those students will make good pharmacists/techs whichever they are studying to be, if they continue to listen to patients and caregivers.

PT came in and, although he didn't want to, Bill did work with them. He walked to his chair and his sats only dropped to the upper 80s this time. Since his base number is 88, and he dropped to 87, that's not tood bad. He walked from his chair to the door of the room and back to the chair, which may have been the distance from his chair at home to the bathroom or bedroom. He dropped lower that time and took a little longer to recover, but he did. I told him when he said that he didn't want to walk, that he couldn't go home until he could walk around the house.

Two nurses from lung came in and listened to him and said he was moving air nicely, but still sounded junky. They asked about the shaky vest and I said it had only been used to my knowledge on Wednesday afternoon when they brought it in for the first time. I didn't know if they had used the percussion one, they had not while I was there. Since he still hasn't coughed up a sputum sample, Shea was going to talk to Dr. Threlkeld and see if he thought the bronch should be done to see what was growing. So far, no word back on that.

Dr. Curry came in after lunch and also said he was moving air well. He didn't think he sounded as junky as Shea and Dr. Threlkeld did. He's not, or wasn't coughing as much so maybe he is getting it coughed out and just swallowing it, which has been my suspicion all along.

He did better eating lunch. He had about 1/2 of his pork chop and some of his rice and cabbage. He did eat the ice cream of course! And when I talked to him last night he said the only thing he left was some of his dessert which was berries and whipped cream. It's usually more whipped cream than berries. Dinner was supposed to be either baked or fried fish with a baked potato. I'm hoping his was baked as he likes baked fish. I didn't ask him when we talked. 

He was doing a lot of coughing while we were talking and he did say they brought in something and used on him, so it might have been the percussion device. I told him when he was coughing like that to spit it into the cup and then call the nurse. Whether he remembered to do it or not is a mystery.

I came home a little early yesterday afternoon. Bill wanted to go back to bed earlier than usual and I had a headache so I asked if he minded if I left. The weather was still so bad I didn't want to drive home in the dark in it if possible. He said he didn't mind, and it rained so hard at times and there was so much traffic, especially trucks, that it took longer than usual. I had planned to go to bed early, but both of my craft packages came in yesterday, so of course I had to look them over, and get them both started! I am going in a little later this morning since it is Saturday. There shouldn't be as much traffic and I should be able to get a decent parking place. Bill had asked if we were getting any visitors and I told him I didn't think so, but I think Brianna and David are coming down today and Emily and Bryan may come tomorrow. I don't know if either of them will bring McKenna or not, depends on her busy schedule!

So, that's it. For those of you wanting me to slow down and take care of myself, I'm doing the best that I can. It's much easier said than done to tell a caregiver that you must take of yourself so that you can care for your person. We know that already, it's just not as easy as it sounds. We also have to deal with "normal" life, like bills and pets and household chores, and a lot of time, taking care of ourselves is just sitting in the silence of our home doing nothing. When I came home early the other day to meet the chimney sweep, I needed to vaccuum before he got there. But, the only thing that got done was the cat toys got picked up. Still haven't vaccuumed. And yes, my granddaughters have offered to help, so you can't fault the family for not stepping up. I just haven't taken them up on it. They do some shopping for me, which right now is enough. So, while I'm tired, my body will tell me when enough is enough as it has in the past. And until you've been a full time caregiver you can't know what it's like. OK, off my soapbox. This wasn't aimed at anyone in particular, just a general reminder.

Hopefully we'll have a good week-end and they can start weaning Bill's oxygen. He was still on 6 liters yesterday. But, it looks like another Thanksgiving in the hospital. Oh well, the food was pretty good last year! See you tomorrow!

Well, it was not a really good day yesterday. If I was in the habit of giving these posts a title, as all good bloggers do, this one would probably be "Bill is full of crap". And for most of the morning, he was!

Since I'm not in the habit of keeping close tabs on his bathroom habits, I hadn't realized that, most likely, he had not had a bowel movement since his little bout with diarrhea Monday. As soon as breakfast came yesterday, Bill said he needed to go to the bathroom. So, Magnolia got him on his commode. Usually he's the type that when he has to go, he goes. Horace doesn't even leave the room because he knows that almost as soon as he sits down, he will be finished. Not so yesterday. For nearly 2 hours, he was on and off and complaining that he had to go and he could feel it just hanging out. He would have gone just a little bit and nothing would be visibly hanging. Once Magnolia did feel something as she was cleaning him but she didn't try to get it out, only pinched off what she could feel because she didn't want to impact it anymore than it already was. Brian brought him a stool softener but you know those don't work immediately. I talked to Cindy and she said if he didn't go, and the Colace didn't help then they would move up to a mild laxative, and if all else failed, an enema. Bill was ready for the enema, he was so miserable. He finally wanted to try one more time and this time when he sat down he said it was coming. When Magnolia came to clean him up, she just looked and raised 1 arm and mouthed Thank you Jesus! Then she motioned me over to look and oh, my goodness! As Magnolia said "We hit the motherlode"! Poor man, no wonder he was miserable! That was probably what was causing his appetite problem some! He was totally worn out after that and wanted to get back into bed. I didn't argue, he actually sat up for 2 hours, talking/listening to various doctors, although it wasn't in his chair but on his bedside commode.

I talked to the dietician about his appetite that seems to be non-existent. Yesterday they did weigh him, but Brian said that he was so shaky standing on the scale that they weren't sure they got a good weight. So, I don't know how much he has lost. I explained to Mary that he seems to be overwhelmed by the amount of food, not the portion size, just the number of different things. She said she could understand that but I don't know if she's going to put in an order for reduced amounts. She is putting in an order for Glucerna shakes to supplement him. I don't know if he'll drink them or not, he hadn't gotten one by the time I left. He did tell me he ate all of his dinner which was turkey so I asked him if he was only not eating when I was there and he said "I guess". But, he had to be hungry! I took away his oatmeal cookie at lunch until he had eaten most of his chicken pot pie.

He did get changed to a diabetic friendly diet. I noticed that there was no sugar with breakfast, only sweetener. I couldn't tell if the jelly was sugar free for his toast, but he wouldn't have eaten it anyway. It was my favorite, blackberry, but he's not fond of it. He's a grape guy. So, we'll see how meals go today.

A new doctor, Dr. Kirby, came in and since he was addressing his oxygen issues, I assumed he was with the lung group. He said that you can definitely see the pneumonia on the xrays but since he's staying well oxygenated now at 5, he wanted respiratory to start reducing his flow until he's in the 90s at rest on 3 and then we just increase to 5 when he's moving. I asked Brian, the nurse, who he was and he had no idea! I described him, short, round, black man, and he had no clue! He did say that respiratory came down and said they were told to start lowering his flow and he told them no, he was not ready for that. It's not just when he's moving that he drops, he when he eats, or gets a little agitated or concentrating on something other than the TV or his puzzle book. I don't know if the hospital/Dr. Edwards is deciding that he's been there long enough or what. I did see Brian outside the unit talking to Dr. Yaranov, but whether it was about Bill or not I don't know. I  do know that while I was there, they did not use the shaky vest or any other equipment that Tom had ordered. Maybe they decided that since it hadn't helped they wouldn't do it. I also noticed that his breathing apparatus was gone. I think it got put on his dinner tray and carried out. He has one here at home and I'll take it today.

Physical therapy did come in and tried to work with him some, but when he sat up he got dizzy. He did sit for a bit on the side of the bed without support, and then was finally able to walk to his chair, but that was it. I'm hoping it was just due to all of the events of the morning. We'll try again today.

I think that's the highlights of the day. It's going to be another lovely commute in the rain. Yesterday it wasn't bad, only had some light patches of rain. But, this morning it's coming down pretty good. I'm so glad I stopped and got gas when I got into town last night.

I'd better get a move on and get dressed. A nice rainy day sitting at home knitting on the grandkids afghans sounds like a lovely idea, but not to be, and the afghans are both at the stage where they are too big to carry with me. I'm also crocheting one for Emily. She never asks for me to make her anything and she showed me a picture of one. It's a kit that comes once a month and there's everything needed to crochet 3 different strips. The first set only took me 2 days and now I've waited a month for the next set. It's been shipped but not due to be here until Monday. I do have the stuff coming today for a baby afghan for our newest great-grandchild coming in the summer, but only stuff to keep my hands busy today that don't mean beans if I have to rip them out.

OK, the boat needs to leave in 20 minutes and I'm still in my pjs. Happy Friday!

Yesterday was one of those days when nothing much happened, but then why do I have 3 pages of notes in my little notebook? I had taken the computer yesterday to update this in real time, to save me some time in the evening/morning, but the internet is so bad I couldn't even connect to it. Or, I could connect, but a page is supposed to come up for me to agree to terms and it never did, so I couldn't go anywhere. Anyway, I tried.

Bill said he was bothered all night, but since his time perception is off most of the time, he was probably only remembering when they came to do morning labs. Yes, they do them early in the morning, but he's not on any protocol where he needs turned or checked every couple of hours so they should have left him alone most of the time.

He got into his chair for breakfast and his oxygen dropped into the 70s. His flow was on 6 which is still higher than we can do at home. Dr. Oktied came in and had adjusted his insulin yet again. I asked him about a diet change. They just have him on a healthy heart diet but not diabetic, so he was going to make that change. His breakfast was scrambled eggs, 1 turkey sausage link, a blueberry muffin, grapes, coffee, milk and 2 containers of apple juice. He didn't eat any of the grapes, ate at least 1/2 the muffin, a couple of bites of eggs and about 1/2 the sausage link. But he drank all of the juice, the milk and the coffee. So, I think they will change things to sugar free, and restrict some things now. 

 The lung team has ruled out a bronchoscopy for now. Tom said that when looking at his newest x-ray and overlaying them with the older ones, they look about the same. So, why has his breathing worsened if they are basically the same? They had ordered the percussion vest on Tuesday, and it still had not been brought in, which didn't make him happy. A shaky vest finally came about 3 and Bill hated that. It also didn't help loosen anything in his chest. He still doesn't cough anything past the top of his throat.. His nurse Lizzy brought in one of the little suction things and he would use it, when there wasn't anything in his mouth or throat, but at least he tried to use it. His breathing treatment med was also supposed to be changed and I don't think it was, so another thing for pulmonary to be upset about. I made it worse in the afternoon when I said that cardiology strongly suggested they do a bronch. They were not basing it on the x-rays, they were basing it on how he sounds. Even I can tell how junky he is. But, that really ruffled Tom's feathers. He did say that the dr. would be rounding today so I don't know when I'll be leaving the hospital, but I'm going to stay until he comes by.

Pharmacy came by and were asking about the Bactrim again. They explained again that it's not one that most people stay on forever, usually only about a year. This time though, when I explained why, they asked if they could consult with his Mayo doctors. FINALLY! Someone actually wants to consult with his doctors! I gave them Stephanie's direct number and the main number and told them to ask for the transplant cardiologist on call. Hopefully it will get straightened out.

Bill worked a little with physical therapy. He did a little walk around his bed and had to sit on the bed. He also couldn't sit long without support and his oxygen dropped again to the mid 80s, and he's just not recovering well now. His oxygen was bumped up again to 10 for a bil but they were able to get it back down to 6. When he is just sitting watching TV or working on his puzzle book, he stays in the mid-90s where he should be. But, any movement at all, even eating, he's dropping.

He also is not wanting to eat. Yesterday was spaghetti, and they put it in a n individual ramekin, about the size of what a banana split would come in. There was also a salad, some green beans, garlic bread and pudding. When I came back with my lunch, he had barely made a dent in the spaghetti, and ate a couple of bites of bread and he told me he was full. I told him he was not full and he was going to eat if it took him all afternoon. I didn't care if he ate the green beans or the salad, but he had to eat the pasta. He finally ate most of it and most of the bread and of course all of the pudding. Granted there wasn't much in his little dish. He did ask me later in the afternoon if I had any cookies in my bag and I did not, so he is feeling hungry. I don't know when/if he's been weighed, but I think I could just about reach around his ankles with 1 hand, and for those of you who know me, I have small hands. I've told him they will start using the tube to supplement his meals if he keeps losing weight, so I'm going to ask about his weight today.

That's about it. My notes were more detailed, but a lot of that was just thoughts I had at the time. You've gotten the highlights. I told him I would bring his razor today, but his beard is just about too long for it. It's going to really need trimmed first. I know Horace is off today, but maybe we'll have Caleb or Eunice and they are both good at shaves.

I just heard a few raindrops hit the window. It's going to be a rainy couple of days. Most of it is supposed to come tonight into tomorrow, but it's still not going to be pleasant driving or walking from the parking lot. But, my coat has a hood and I have my umbrella so I'll be OK, but not if I don't get a move on and get ready to go.

Talk to you tomorrow or tonight if I'm not too tired, or fielding phone calls. And, if I don't answer a call, it just means that I'm either talking to someone else, or I need the silence to decompress myself, or have some uninterrupted dinner. This is the best place to get information.

For those of you who have been looking for a new post for a couple of days now, sorry it's so late tonight. But, as there is no set time for me to do them, just keep checking in. Before I get you caught up, or try to get you caught up, I'm extremely tired tonight, and I even had Emily take over staying at the hospital this afternoon (she was already in Memphis and I was supposed to meet the chimney sweep this afternoon). But, I really want to turn all the lights out and go to bed.

Yesterday did not start out well. When I got to the hospital I noticed that Bill's urinal looked like it had some mildew in it. I did not inspect it, just figured that they would throw it away when they came in. But, he said he needed to use the commode and he didn't think he could hold it. The nurses came right in when he called and he had diahrrea and then he said he was going to throw up so I grabbed his basin and dumped everything out just in time. It took awhile to then get him cleaned up and his feeding tube got caught in all of the mess. But, his nurse cleaned and sterilized it. When I looked at the urinal again, he had vomited in it at some point and just didn't tell anyone.

He then said that his right arm hurt from his shoulder to his fingertips and since that is the one with the DVT I called his nurse. She felt his arm and it was very warm compared to his left one, so a STAT ultrasound was ordered. It showed that the DVT was still in his armpit and hadn't changed and there was nothing else found. The pain went away and the warmth left. He was running a slight temp, but Tylenol took care of that and Zofran took care of the nausea. He even felt well enough to eat lunch.

We found out that Dr. Shirwany deferred to Dr. Edwards and when I told the nurse for the umpteenth time why we did not want Edwards, she said we would probably get Yaranov, which is fine, we like him!

One of the case managers came in and we discussed home health and he's already working on getting PT and nursing for awhile. They were supposed to set it up the last time but it didn't happen.

The lung drs. (and I'm sketchy on this) said it wasn't feasible to do another bronchoscopy at this time. (More on this later).

PT finally came and got him into his chair. The entire room had to be rearranged. They will not increase the length of oxygen tubing because it is high-flow, so they won't go longer than 7 feet. But, we got the chair next to the bed and the tubing is long enough, so he sat in the chair for at least an hour before I left. I don't know how much longer he stayed in it.

His insulin has been increased and a long acting one has been added. Dr. Oktied said that when he's ready to be discharged, we will talk about what ones to use at home. He said that his A1C was 8.8 and they want it under 6.5 so he will probably continue to use insulin, even if he is able to get off the steroids.

A nurse from our lung group came in and I really like him. He said he was going to have a new x-ray done and they he and the doctor, that we haven't seen, would get together and review everything. He did say that a bronch was not off the table yet since he still sounds pretty junky. We talked about some different therapies, including a sleep study and a cough assist device. No-one from the other lung group ever mentioned things like this.

This morning a nurse from pulmonology came in and was surprised that he hadn't been taken for his Thallium test. Turns out that she had the patients confused! She's not the only one, since nothing had been said about any testing.

His board showed his goal for today was a down arrow SOB. I couldn't figure out what that was so I asked his nurse and she it was "decrease shortness of breath". Makes perfect sense when you know the shorthand!

Dr. Threlkeld said that he's responded well to the antibiotic. They all seem to think that's he's still aspirating some. He did say that we all do it, and I guess the difference is that most people have a strong enough immune system that it can fight it off, but since Bill's is compromised, he just can't. He also said that it could be sinus drainage that is sneaking through while he's sleeping.

Tom, the pulmonary nurse I like so much, said that his x-ray actually looks worse than it had in the past. Since Bill is not able to cough up the secretions, they may bring in a vibrating vest to shake him up some. When I talked to Bill tonight, it had not been done.

After I left pulmonary did come in and Emily also missed them. But she talked to Cindy, the cardiology nurse and she checked the computer and said it looked like they were going to hold off on the bronch for now, but if he got the least little bit worse they would do one. 

After he had his bath this morning he walked the 4 steps to his chair and I checked his oxygen and it was only 69. That's pass out level. But, he wasn't in distress, his nailbeds were not turning blue, it was just breathing a little harder and his heart rate was up. His O2 was increased to 7 again from 5 before it reached 90. So, until they can get him stabilized with his oxygen level, and keep his sats from dropping so low, he'll stay where he is. Maybe something will get figured out.

While I was waiting for the chimney sweep, who I think I already said didn't show up until after I had to go to the bank before it closed, I had planned to do some research on some things they've talked about. But, I wasn't able to do that, and I'm too tired to do that now. I think I'm going to take my laptop with me tomorrow. The wifi at the hospital stinks, but I can always turn my phone into a hotspot and pair them to get a better signal.

I think that covers most of the last 2 days. My brain doesn't want to work anymore tonight. I should be able to get back onto a more normal schedule tomorrow, but for now I'm calling it a night. The cats and I are going to bed!

Bill was again having an interrupted breakfast this morning when I got there and he was rather testy about it. I suppose I would be too under the circumstances. Respiratory got there right before breakfast came for a breathing treatment and then the nurse came with all the meds and sugar checks. He just said he wasn't going to eat because it would be cold, but Molly took it when she finished and heated it, like I knew she would.

It wasn't as good a day today. He just didn't feel well and said he hurt all over. I think a lot of it was just being in bed for 3 days with only getting up to use the bedside commode. You know how you feel when you're sick and have been confined to bed, you can't get comfortable. He was also coughing a lot and I think his muscles are just sore from that.

They are giving him everything they can to get the secretions thin enough for him to spit out, but he just won't do it. Dr. Schriner, the new lung dr. this time, has not ruled out needing to do a bronchoscopy if necessary. The pulmonary nurse that came in was going to look at his x-ray and see if they needed to tweak anything. The IV antibiotics are working and Dr. Yaranov said he didn't hear the wheezing today that he heard yesterday.

Things may ramp up some tomorrow since the week-end will be over. They did get him switched to the high-flow nasal cannula oxygen instead of having to use a mask, but he is still on a pretty high amount and it will have to be lowered before he can come home. They may start some therapies tomorrow, but that hasn't been mentioned. His tubing is not long enough for him to get to his chair and there would have to be some major rearranging for him to be able to sit in it, so I'm going to see if they can get some longer tubing. If not, I'm going to see if he can sit on the edge of the bed and at least do his leg exercises. I always keep a pulse ox with me so his sats can be monitored if therapy isn't coming in.

That's really it for today. I'm updating tonight because I'm leaving early in the morning and didn't want to rush through in the morning. 

I'll update after tomorrow's festivities!

Bill was trying to have breakfast when I got there yesterday and Amanda from cardiology was there disturbing him, along with Marcus, the nurse. Apparently they had weaned him down far enough to use a nasal cannula at some point, but as he was eating his sats dropped to 77, so they were going to put him back on a mask. I don't know if any of you have tried to eat or drink with an oxygen mask on, but picture it this way...get your food on your utensil, take the mask off without dropping your food, put the bite in your mouth, put your mask back on, chew the food...repeat. The same with drinking. Get the glass/cup in your hand, take off the mask, take a drink, put the mask back down. I think all Bill managed to eat was his Cheerios and banana. He left the eggs and sausage untouched, but I wouldn't have wanted to eat after all the messing around. At one point Marcus mentioned that they may want to move him to ICU. That did not happen. After a breathing treatment and being put on super hi-flow oxygen and mask he evened out and his sats came up to the low 90s. Bill doesn't like the hi-flow, it dries him out too much so that he wants to drink more, but he can't drink freely so it was a tough day.

He was started back on the IV antibiotic after I left Friday night. It's the same one as before. Dr. Yaranov said that his white count had already come down to 9, so the 2 infusions of Rocephin and Omnicef had started to work. We again talked about long term antibiotics and he said that was still on the table and we would all get with Dr. Threlkeld about that. They are considering using the IV steroid they used last time but the lung people had not made a decision on that either.

We also talked about the Bactrim and why he was on it and, it's so nice to say one of the Mayo names and he understand the reasoning! The Bactrim had been discontinued, but he started it immediately after we talked. 

Bill kicked me out about 3. He said I was just wasting my time sitting there and he knew there were other things I needed to be doing. I had planned on leaving about 4 anyway and I did need to go to Walmart and get gas, so I didn't argue. We still hadn't seen a lung doctor, and Stacy, the supervising nurse, said that they were also ordering an endocrinologist consult. All of these antibiotics play havoc with his sugar, along with the steroids. So they were calling Dr. Oktied. He had not come in before I left. I told Bill that if any drs. came after I was gone and needed to know something he couldn't answer he could tell them to call me. They all have my number.

Bill himself called me about 6:30 and said that they had him back on the nasal cannula using a high low one and he ate all of his dinner. He said it was a lot better. Since I didn't get any calls in the night, I guess everything went well in the night. He also said no-one else except nurses and respiratory had been in to see him.

The phone call from Dr. Threlkeld has worked miracles! I don't think he was pleased with what class of patient we were considered. I don't mean we were treated badly, but you've heard about the attitude that Dr. Edwards and 1 of his nurses had, and we were told early on that when Bill was in the hospital, we had to see the transplant lung doctors. I don't mind that group, at least they listen. Anyway, on Bill's board it shows that Dr. Shirwany is the attending physician, and we have seen Dr. Yaranov each day. He did say that Dr. Munday would be by, but Stacy also said that he wanted Dr. Shiner/Shriner from OUR lung group to see him. So, since I had also told Dr. Threlkeld who Bill's pulmonologist was, we are now getting something done. His doctor, Dr. Burbeck, doesn't round. She's in a wheelchair, and while I've seen other doctors in wheelchairs or scooters, she may also have another reason. But, at least it's the same group and they can see the notes in the office.

That's how our Saturday went. I got my shopping done, but I forgot printer ink which was one of the reasons I needed to go to Walmart and gas and was totally wiped out when I got home. I had bought some easy things to cook, mostly frozen dinners, but stopped at Taco Bell instead. And yes, Mom, our deal still holds about 1 meal of real food a day. For lunch I had country fried steak, mashed potatoes and gravy and corn, and ate every bit of it. For those of you who are knew readers, after the transplant, my mom and I made a deal that I would have 1 nutritious meal a day. If that was lunch, then I could go home and eat peanut butter toast if I wanted. At the same time, if I ate a not so nutritious lunch, I had to have a decent dinner, whether it was out or home. And I have kept to that.

So, we'll see what happens this morning. I need to get moving although I don't have to leave as early today again as I will tomorrow. It was a lovely drive yesterday morning and afternoon, pretty day, lighter traffic, and a good parking spot. Hoping for that again today. Tomorrow by this time I will be on the road with all of the trucks, hoping to get a decent parking spot and fighting the early morning traffic in Memphis.

Until tomorrow, or tonight whichever I feel like doing!

I thought we'd dodged a bullet this week, but it wasn't to be. Bill saw the Infectious Disease dr. Memphis and I had had his labs done the day before and saw that his white count was up, as I suspected it was. I really wish there was a home test for that! Anyway, Janet, the nurse practitioner, listened to him she brought Dr. Threlkeld in for a listen. We also had a very frank talk about the transplant cardiologists.

Janet asked if I had contacted the transplant center and I told her no because they wouldn't care. She had a young man shadowing her that day and his head popped around immediately. I told her that I had been in touch with Mayo and they were good that he was seeing Dr. Threlkeld as this wasn't something transplant related. Anyway, when Dr. Steve (he and his brother practice together) came in he asked which of the cardiologists was Bill's and I told him we prefer Shirwany over Edwards and Yaranov over both. I also told him what Chandra had said last year about Bill technically not being their patient and not wanting to follow his meds, even after they had made the changes to them. I asked if Dr. Yaranov saw patients in an office setting and he said he thought he did and I said we would gladly see him. So, he said "Let me make some phone calls". 

After he left the room, and didn't come back, it was decided to give Bill an infusion of Rocephin and then oral antibiotics. They would have preferred to have him do daily infusions of something else, but didn't want me to have to drive down there every day. I told her we have an infusion center at our local hospital 10 minutes away, but none of them are licensed to practice in Arkansas, so they couldn't order them for our facility. She said that if, when we went back to see her on the 25th, if he was not better, it was "back to the hospital for a tune-up".

This was on Wednesday. Thursday he started the new antibiotic and did not move off the couch from the time he walked into the room from the bedroom until it was time to go to bed. He was "so weak" that I had to get his urinal from the bedroom for him to use. I don't know what he would have done if he had to...you get the picture. I decided that day, especially after repeatedly telling him that he was turning himself into and invalid that I couldn't take care of and we would have to start using his feeding tube because he was starting to not eat enough to make me happy, that yesterday would be the beginning of "Keep Bill out of the Nursing Home". He wasn't going to like me very much but I was going to make him move and eat. His regression is as much my fault as his for not making him do what he was supposed to do. But as I told Mayo once, sometimes you have to stop being the caregiver and be the spouse and it's a very fine line to walk.

Anyway, in my quiet time yesterday morning, I fixed a schedule for him. When it was time for his meds, I told him he had to get up and dressed. He managed to put a shirt on and that was it. He could barely move, so I started gathering things together to head to the hospital. I called and left a message with Dr. Threlkeld's service and when I started to get Bill dressed he just said "I can't", so I called 911. 

One of the crew members had been to the house before and remembered that he was a transplant. Another one told me, after I had told him about bumping his O2 to 5, switching from cannula to mask, and giving a breathing treatment when I couldn't get his sats above 84, that I had done everything right that was in my power. He did suggest that instead of just switching to mask to also use the cannula using tank air. That way he got oxygen no matter how he breathed. I had not ever considered that, but since I keep a tank ready all the time, I will do that the next time.

Anyway, off to the local ER and they got him stabilized. It took quite a while to get his oxygen level up and for awhile it wouldn't stay stable. It also took 2 hours from the time this ER called the ambulance provider back for transport to Memphis before it got there. The dispatcher screwed that up. It was the same crew as before, and becaue Bill was on oxygen and a heart monitor, not only did he get 2 EMTs, he also got a paramedic. So, arrived at ER a little after 10 in the moring and headed to Memphis about 2:30.

He was a direct admit to the step-down unit, which was a plus since that meant that he wasn't critical needing to go to CVICU. The nurse said that when she gave them his name, they said we were like family coming home! Not the kind of home I would want to go to, but it was a nice thought. And when I saw Horace, a favorite PCA I gave him a hug and thanked him for inviting us for Thanksgiving!

He was getting settled in when I got there and I found out that his admitting dr. was Dr. Yaranov. Dr. Edwards is the attending, so Dr. Yaranov must still be surpervised somewhat. He missed dinner and they brought him a turkey sandwich but he only took a couple of bites. They were lowering his oxygen little by little to get him off a mask and back to cannula, but it was going to take most of the night to do that. They didn't want to rush it. It was very hard for him to remember to take it off to take a bite or a drink.

They had to do another PICC line because the IV site Blytheville had put in had gone bad. It was bleeding under the covering and the nurse (a student who was very good) couldn't get it to stop bleeding. She needed to get some more gauze and told Bill to put his finger on the pad. As she left the room, I walked over and got some gloves and took over for Bill. She was surprised when she came back in with Rachel, the actual nurse, that I was gloved and holding pressure. I just told her Mayo trained me well. When she took over I took the gloves off and sat back in my chair.

Dr. Yaranov stopped in before I left and said we would discuss all options with Dr. Threlkeld, who he did talk to on Wednesday, about long term antibiotics, and of course the lung team. I told him we can't keep coming back to the hospital every 10 days. I then came home for the night and will go back shortly. I was going to stay in town a little later to take care of some banking, but I have to come home early on Tuesday to meet the chimney sweep, so it can be done then.

I did some figuring Wednesday and Bill was in the hospital these same dates last year. I also looked up all of his hospitalizations/rehab stays/skilled nursing and, out of 491 days, going from his hospitalization in June of 2018 through his last discharge Nov. 2 of this year, he had spent 177 days in the hospital! Just 3 days shy of 6 months! That's a lot!

As an aside, there is another man from Blytheville in need of a transplant and has gone downhill rapidly this week. They have moved him to the transplant ICU, which isn't unusual. What is unusual, and frankly very disturbing, is some of the information they have been given. He was at a status 6, which is the lowest status and means that you can basically live a relatively normal life. They were told the highest status was 2 and he wasn't there yet and wouldn't be able to get a heart if one became available. The highest status is 1A and Bill was at that for 2 months because of the malfunctioning seal in his LVAD. They were also guaranteed that he would have a heart in 2 weeks! Now remember, the heart is the only organ that the donor has to die for it to be able to be available. All of the others can be living donors, except possible corneas or bone. But to guarantee 2 weeks! There are so many factors against that. But, as Emily said, when the dr. thinks he's a god, what do you expect. I wondered if he was going to start killing people just to harvest their heart! Anyway, even while joking about this, the young man is in extremely critical condition, and I pray he does get a heart soon.

And, as you know God sends angels in all forms. When I was getting gas yesterday and car pulled up to the other side of the pump and a very nice black man said hello and we chatted about the warmer weather a bit. He wanted to know how my day was going and I've learned not to just say fine, so I told him about Bill and he immediately wanted to know his name so that he could pray for us. He may not, but from talking to him, I believe he did and will.

So, I think I got everything caught up. It's a little after 7 and I need to get moving. I told Bill I would try to be there by 10 but that was when I was planning on banking. So, I need to throw his pajamas in the wash and get some clothes on and gather the few things I hadn't picked up and hit the road.

Daily updates will begin again, so stay tuned!

We made it through the first week at home. It was trying at times, I'm sure for both of us. Bill still is not wanting to move much, and when I tell him to do his exercises, he just starts wiggling a finger. Very frustrating!

We did have a talk about him getting weaker and if that happens, I won't be able to care for him and he'll have to go to a nursing home. I didn't say that to be mean, but it's the truth. If he should fall, I would be hard pressed to get him up.

He did get better as the week went on until yesterday evening. He stopped keeping his urinal with him and started to walk to the bathroom to do more than...well you know what he can't do with a urinal. He also started getting dressed instead of staying in his pajamas. Now, I like staying in my robe and pajamas too, but not every single day. So, getting dressed without me telling him to do it was a plus.

His appetite has been slow to come back. Part of the reason for that is he's drinking more. We had burgers the other night and he only ate 1/2 of his, but he drank 2 glasses of milk. I've told him I'm going to have to treat him like we did the kids, limit the amount they could drink until they had eaten. He got better after that, but still only ate 1/2 of his sandwich the next day for lunch.

His stomach still seems to be full of gas/air. If he has been reclined some, as soon as he sits up he starts belching. He's on a probiotic and an acid reducer so I'm not sure what is causing that. It's almost like he has acid reflux, which he could have. 

Yesterday we had a turning point with meals. I fixed a big breakfast; eggs, sausage, biscuits, gravy, coffee and Bill had 2 eggs, 2 sausage patties, 1 biscuit, with gravy on half and butter on the other half, coffee and milk and cleaned his plate! I told him since we had such a big breakfast that if he didn't want lunch, that would be OK. But, around lunch time he saw an ad on TV for pizza and said he thought he might like to try pizza. Instead of ordering one, I just went to the store to get the frozen ones we like and he ate 4 slices! During this time, he didn't complain about his stomach at all. We've tried having him eat before taking his meds, but his meds are the same as he was taking before so that stymies me a bit. 

Mid afternoon, he told me he couldn't get up to go to the bathroom, he was just too weak and his stomach was bothering him. I was on the phone so instead of insisting he get up, I just got the urinal for him. He was still complaining about his stomach, but decided he wanted a bowl of chili for supper. I had made it the day before since it was cold and rainy and he ate a big bowl of it. By 8, his stomach was bothering him, and he wanted to go to bed, but I had to help him to the bedroom (he stopped using his walker by Wednesday). Again, every time he sat up straight, or tried to stand, he would grab his stomach and start burping. (I had terrible reflux in the night and my throat still burns, even after the Gaviscon at midnight). So, it's still a mystery. We haven't gone to the local dr. yet. They are in the middle of switching to a new system, and our practitioner is up to her hair roots in it, which is driving the ones who are actually being trained on it nuts, but that's another story. So, I'm just monitoring it.

Brianna came over Monday and between us we got his feeding tube flushed. It did take  using the little skewer again before we could get the water through. She found out that some of what they were told in nursing school was wrong, and she passed it along to her fellow students. They had been told that patients couldn't feel when the tubes were flushed, or bolus feedings were given. Bill can feel when his tube is flushed (the water is cold). She had also asked her instructor if the water should be warmed first and she said it didn't matter. I haven't tried warm water to see if he can tell a difference. 

His sugars have gone up again and he's coughing more again since he's been home. But, his oxygen levels have been within his normal range except for after he's walked. He's dropping, but we know he does that and he recovers well. We see the infectious disease dr. on Wednesday. We actually see the nurse who told us last time just to avoid sick people and wash hands a lot and they he was in the hospital the next day. I requested labs be done on Tuesday so that I can go armed with a white count this time. I also heard from Stephanie and she wants to have his Prograf level checked since Memphis increased his dosage, so we're getting that done at the same time.

I have a dilemma about which lung dr. to call. We love Dr. Burbeck, but whenever he's in the hospital, he has to see the lung group the transplant program uses, no matter how much I've complained. So, that group now knows more about him than Dr. Burbeck, so do we switch to the other group? Dr. Burbeck can read all of the hospital notes, so she can have the same information they have. I'll have to think on that a little more.

So that's it, I think. The cats let me sleep until 6 this morning, which was nice since I was up and down all night. And Bill has gotten up and needs to have some breakfast before his meds, so I'd better get busy. I'll let you know what we find out Wednesday!

Bill is home! He was discharged about 11 yesterday morning. He's still pretty weak and his stomach is still bothering him. He's not complaining about me making him use his walker to get around and he said he can't believe how hard it is to get anywhere in the house.

I told him he could have the week-end off as far as his exercises go, but come Monday, the fun begins. There wasn't anything in the discharge paperwork about Home Health, so I'll call them tomorrow morning. I've also got to call Mayo, Dr. Threlkeld, and Dr. Burbeck. I think I'm also going to make an appointment with our dr., especially to have his stomach checked out. As soon as I'm done with my morning internet surfing (it is a habit you know) I'm going to start making my Monday to do list. I usually do that on Sunday night, but since it's fresh in my mind, I'll do it this morning.

They didn't make any medicine changes and he didn't come home with any antibiotics. They think they got it with the IV ones. But his white count is still a little higher than I think it should be at 14.3. But, what do I know, I'm just a wife! They also increased his Prograf (transplant med) so I need to find out from Mayo when to get labs done to check that level. They've put him back on his regular steroid instead of the high powered one and back to his regular insulin regimen. I was surprised that his sugar was only 117. It hadn't been that low for a long time, even fasting. But his A1C was 8.8 which was higher than the last time. So, another thing to talk to Connie and Mildred about at the local dr.

He did lose 13 1/2 pounds in the 10 days he was there. The sheets that come with meals don't list calories, they only list grams of carbs, so I don't know exactly how many calories he was taking in. So, we'll be back to packing on the calories for a while. I'm sure the weight loss has contributed to the weakness.

So, there you have it. He's home, Cat was in his lap almost as soon as he sat down, and Mouse looked at me like "who is this and why is he here". He warmed up to him again after a while, but Cat didn't want to share him at all! And Bill was just as content to have her on his lap as she was to be there.

Unless something happens during the week, I won't update again until next Saturday as usual. But, if necessary, I'll post sooner. I hope everyone enjoys the time change. I didn't really get an extra hour of sleep since the cats thought 3:30 was breakfast time. But, I just booted them out of the bedroom and closed the door and slept until 5:30, so I guess I maybe did get an extra hour!

This is going to be hard to do today. As I was getting out a bag of popcorn last night, the edge of the box sliced under my fingernail. Now, y'all know how that feels! So with 2 bandaids on my finger, it's a little hard to type this morning. I can probably take them off, but right now it's too early in the morning for all that. So, I'll suffer through.

Bill is coming home today!!! Other than his indigestion from the day before that carried over to yesterday, he's so much better. He finished  the entire regime of IV antibiotics and while I forgot to ask what his white count was, he was just...better. Not coughing as much and not laboring to breathe at rest like he had been. The main problem from the last 2 days was indigestion and feeling bloated. I finally asked him and he couldn't remember, so I asked his nurse when his last bowel movement was. He couldn't remember, but Emily said it had been a couple of days, even with Colace. I guess one of the side effects of the IV steroid can be constipation. So, I think he was just full. When he did have to go it took him a little longer than normal. He's one of those that sits, does his business and is done. Horace, the aide said that it was a good solid one. That made him feel better for awhile. I told Emily (nurse Emily not daughter Emily) that he may go again since he was now opened some. All of the indigestion signs went away...until after dinner. When he called me the hiccups were back. I told him to ask for something again. They had given him something like Gaviscon during the day. I told him they didn't want him to get any acid reflux which could cause pneumonia again and may actually have caused this one.

He did all of his therapies, including working with occupational therapy with a therapist that I'm not fond of. I can't say that I don't like her because I don't know her, but she's very loud and a little overbearing. But, he needed to work with her, so I encouraged him to do it. He had already shaved. I took his electric razor with me yesterday and he did that as soon as he finished breakfast. But, he went in and washed up and got a new gown on and looked a little more human.

Speech came in and his swallowing exercises were finished in about 10 minutes. He breezed through those. His breathing ones also went fast, so she increased the resistance on his little device. She didn't just go up one notch, but 2 so he's on the next to the highest resistance. She's been really impressed with him.

Physical therapy came in and we went over the home health group we use as they are going to set him up for that again. He didn't walk quite as far as the day before, but he did well and, while his sats dropped to 77 at one point, he rebounded quickly, even into the mid-90s.

Respiratory had set his oxygen at 3 1/2 after his afternoon breathing treatment so Emily was checking his saturation a little more frequently to make sure he was maintaining at least his baseline of 88. The last time she checked it was 96, which is better than a lot of "normal" people. She told him she was impressed and he said he was glad he could impress someone, just as Dr. Williams walked in. I pointed to him and told Bill he was the one who had to be impressed and he said that he already was. He gave him a listen and said "I'm gonna tell Edwards he can go" and texted him right there and then. A few minutes later Cindy came in and said that lung gave us the green light to leave. I asked if he could wait until today since it was almost 3 then. She agreed that since it was so late in the day that would be fine. She had said earlier that we would talk about leaving on Monday, for him to just work hard over the week-end. But, lung won the day, as they should have since it is a lung problem that got him there.

So, I've got his suitcase in the car, it was in there from day one, and his heavy coat since it's gotten cold and as soon as they can get the paperwork done and the PICC line removed (unless he's coming home with steroid injections and that hasn't been talked about yet) we'll be out of there.

I told Bill I wasn't coming super early today since it's Saturday. I won't have to look for a good parking place and traffic will be lighter. Although ESPN's College Game Day is in Memphis this week, so there may be more traffic, but it's in an area that I'm not near, so once I get to the city it shouldn't be bad. I'm going to throw the sheets in the wash in a bit so they will be fresh when he gets home, but I'm just going to take my time this morning.

I feel very comfortable with him coming home this time since I can tell that he's feeling better, unlike last time. I hope his discharge instructions are a little more detailed with follow-ups, unlike last time, but I'll also take the initiative with that too.

I had a place come up on my back a few days ago. I thought I had just scratched a pimple open as it was a little weepy and didn't think much about it. But the next day I felt the area, which is almost out of reach no matter which direction I reach and it felt like a much bigger spot and was scaly. I could kind of get a look at it using mirrors but couldn't really tell, so Emily came over last night to look at it. She took a picture of it and it looks ugly. We had too thoughts on it, a psoriasis or shingles. It doesn't really hurt and it's only the one spot. She sent the picture to Mary-Rose and she said it looks more like a contact dermatitis and to just keep it clean and use an antibiotic ointment. Hard to do since I can't reach it. Anyway, when I went to bed last night, in addition to my regular Zantac (and I'm still taking it even though there's a chance that there might be something in it that could cause cancer), a Benadryl and one of Bill's prednisone. That's the magic cocktail for hives. I figured it couldn't hurt and it's not itchy this morning.

So, that's it for the latest update. Even though I don't need to leave right away, I still need to feed the outside cats and get the sheets in the wash and get dressed. I'll let you know when we get home and how that goes and then next week, we will most likely be back to our weekly updates. 

Later, everybody!