This is going to be short because I'm exhausted and don't feel well. I will better update tomorrow. It was not a good day and if I thought last night's fiasco with meds was bad, it was just the warm-up for tonight. As I said, I'll do a more complete update in the morning.

Long day today. Bill did not have a good morning, was extremely tired. Said he woke up about 3:30 and didn't go back to sleep. I don't know how accurate that is because he has a difficult time with time, but he slept deeply most of the morning. At noon we discovered part of the problem. His blood sugar was only 59. So, he actually got to eat about 1/3 of a container of pudding, given by the speech pathologist. It came up after that and he perked up enough to do some therapy. He was much better all afternoon and evening.

I stayed later tonight to monitor his meds. He didn't get his food started at 4 like he should have so I started keeping notes and have an entire page to give to the unit manager Monday morning. He didn't get his meds until 7:30 and the Prograf was given through his tube again. The nurse was very upset about it and when she checked the med cart the box is labeled "gtube". But, the computer system says sublingual. The charge nurse came by while we were talking about it and said it would be fixed, but, he had already been given the meds. The only saving thing about it was that she had not started his food so it was given on an empty stomach.

I hated having to get ugly about it, but enough is enough already! I thought we had this straightened out. Bill also realized that it was done wrong and now he's worried that something bad will happen to him. I told him it was ok that it wouldn't hurt him since his food hadn't started, but he may worry about it all night. I'll ask him in the morning if he got his medicine under his tongue when I get there.

So, it seems like all I have done here tonight is vent. Until the med mix-up it was a so-so day with him not feeling well this morning. We'll see how his night goes and how he is in the morning.

Well, the swallow test did not go real well. But, Bill took the news well and the speech pathologist we talked to was able to put it in terms that Bill could understand. He said that he's right on the edge of being ready for food but he thinks he should work really hard on tongue and swallow exercises and then have another study.

Bill was really tired by the time we got back. He had a packed morning and didn't really get started until after 10. There's been a problem with the laundry and there have been no clean towels and washcloths when the day shift comes on. Of course the therapists want to start about 9 and if he can't get cleaned up it puts everything behind. Speech therapy did it while he was still in bed and then he finally got a shower. He was just getting into his chair and they wanted to pre-medicate him for a dressing change, even though it was not the vac. They were just going to do another "wet to dry" which means they soak gauze in saline and pack the wound and then cover it with lots of dry gauze. I didn't want him medicated because it makes him drowsy and silly and I didn't want anything to jeopardize his test. So they did it without any meds and he did fine. Then we did some OT and got back to his room in time for a breathing treatment. He hates those and just barely puts it to his lips, but he gets enough in that it breaks everything up in his throat and he starts coughing. That probably didn't help in the study, but who knows.

As soon as we got back he got pre-medicated because the container came for the vac and as it was working, he did a little PT. When the meds kicked in he got into bed, got his "food" connected and his wound finished. He was ready to take a snooze so I took the opportunity to sneak out. Not that I was sneaky, both of our cell phones were acting up and mine quit working completely. So I left to go to the AT&T store. Thankfully the problem was with the ATT network and not the phone. The tech got it working again and told me what to do if it happened again. The network is being upgraded to 4G so they are really playing around with it. But, since I'm about 6 months away from being eligible for an upgrade I didn't have to spend a lot of money since I just bought my new glasses yesterday!

So, need to get Bill's laundry going . Stopped off and ate on the way home since it was early so I have the whole evening somewhat free...except for laundry!

I didn't float away during the night and the water did not invade the condo! And, we finally saw the sun for a little while today. Now we're supposed to get the hot weather most of the country has been having.

I stayed home until it was time for my dr appointment and even took myself out to lunch before I went to see Bill. He wasn't in his room, or in the therapy room! But, we found him with his physical therapist, was just in a different hallway.

He had a decent day, got all of his therapies in. They almost got his dressing change done but the company sent the wrong size canister for the vacuum, so they had to do a different dressing until the right canister came in. It came just as I was leaving but I don't know if they changed it tonight or will do it in the morning.

Tomorrow is the big day for the swallow test. I'm praying that he does well. He will be so disappointed if he can't start having some food. So, extra prayers for a good outcome, please!

I don't know if I said anything the other day, but Bill signed all of his paperwork the day of the biopsy! First time since May 2 when he signed the consent forms for the transplant. The last time he tried to write it was illegible. He wasn't really happy with the way it looked, but it looked pretty normal to me. So that's a big step with eye/hand coordination and fine motor skills.

I put his splint on before I left but who knows how long he will leave it on! It keeps his left hand open and he says that it hurts, but since the hand has been clenched for so long it hurts whenever he opens it. Linda, the OT therapist told me that she had him put pegs in a board and then use a gripper to pull them out. And she had him use his left hand. He wanted to use the right one since he's right handed but she was surprised at how well he did. Said he had no trouble at all doing it.

All for tonight. I've noticed that I can be just fine and then all of a sudden I'm exhausted and can hardly keep my eyes open. That's the position I'm in now, so goodnight everyone. I'll let you know how the test goes tomorrow afternoon.

What's that old song "How high's the water, Daddy"? Supposed to get 4-8 inches in the next couple of hours, not days, hours! I came home as soon as I heard that. Didn't have any problems but my little patio is starting to show some water coming in, and not just from the splashback.

We both slept well last night. I went to bed a little after 8 and slept until almost 6. Bill got his sleeping pill last night and was still asleep when I got there at 8:30 but woke up soon after I arrived. He stayed up and in his chair all day and made great strides in therapy. He "walked" his chair everywhere today instead of me pushing him. We just didn't put his footrests on so he pedaled! He also walked a complete circuit in physical therapy and Michelle, his therapist, said that he can walk with the walker as long as someone is with him. He also did well in OT and speech. They really worked him over with swallowing this morning and will do more tomorrow. His swallow test is Thursday and hopefully he will do well enough to start getting some "real" food. He's getting really tired of not being able to eat.

We got the results of his biopsy and again it was 0 meaning no rejection. Dr. Yip also decided to lower his prednisone dose now instead of waiting until next month. Hopefully that will help with the mood swings since that is a major side effect. Some people become compulsive shoppers, some get mean, others like Bill go back and forth, fine 1 minute and confused the next. Of course the stroke doesn't help matters. He still doesn't believe that he got his heart and that the LVAD is gone. I told him that I gave all of his equipment back to Mayo and he said that we could probably borrow it when he gets home if he needed it.

Tomorrow morning should be interesting for both of us. I have an appointment to have my eyes checked so that I can renew my drivers license by mail. It's in the morning so I told Bill I wouldn't be there in the morning. I also let all the therapists know. So, it will be interesting to see if he can manage to call for help to get dressed (although I've been making him do it even when I'm there). It will also be interesting to see if I can make myself stay home instead of running out there for a few minutes before heading to the dr. I'm sure he'll be fine, especially if Lisa is his CNA in the morning. She'll have him up and dressed in no time at all. It will be me with the problem!

Time to look for the waders! I'll let you know how tomorrow goes!

What a couple of days we've had so far! Bill was tired all day yesterday and I left early to miss the heavy rains of the tropical storm. Went to bed at 9 and got called at 11 to come back and stay with him. He tried to get out of bed again. I ended up sleeping on the gym mat they put down beside his bed. It was more comfortable than the straight back chair in his room! Finally got him to settle down about 1:30 and they got us up at 4. Transport came at 5:15 in a steady downpour to get us to Mayo. Biopsy was at 7:30 and we got back to the center at 10:30. Got Bill settled and I left a little after 11 for some food and a nap. Just recently got back and Bill had a nap and was having therapy. He still has speech therapy to go and then a dressing change. I talked to the nurse and she was going to call the dr. to see if he can have something to sleep tonight. He had not slept in 2 nights and was not making much sense he was so tired.

I felt bad that I had to get stern with him last night. It's sometimes like dealing with a 2 year old. I know a lot of it is the stroke and some of it is the medications. But knowing that doesn't make it any easier. It's not knowing which Bill I'm going to be dealing with that's hard, and he can go from coherent to irrational in a heartbeat. He did say yesterday that he knew they had fixed the problem with his heart because now it went "thump" instead of "whirr"!

We saw some good friends at Mayo today that we hadn't seen for awhile. Our friend Ralph was there for his biopsy and John and Cindi were back for a check-up. Also a new friend we had seen walking the halls with her IV pole was transplanted on the 13th and she was back for her biopsy.

The biopsy went well and Dr. Yip said that he is now on the monthly schedule. He was impressed with how he looked. We'll know the results tomorrow afternoon. I got to stay in the biopsy room for the entire procedure which was interesting, but I had to stay far away so didn't get to really see anything. But, it only took 20 minutes from the time the ultrasound tech walked in until the band-aid was put on. The nurse thought that was probably a new record!

Hopefully tonight will be a better night. The weather is still awful with a tornado watch added to the flood watch and rip current advisory and floor warning and lake wind advisory. But, right now it's not raining, not windy, and I'm not planning on going swimming.

Only a so-so day today. Bill seemed tired and was confused this afternoon. He also had a headache which is rare for him. He did tell me that they didn't let him sleep, but he was also thinking that workmen were in his room all night.

We did take a walk to the lake behind the center but didn't get to go any farther because of rain. We made it back just before it started to rain hard. We also played a hand of Uno to help him with matching and coordination. He managed to hold his cards with his left hand, but after 1 hand he said he couldn't concentrate so we stopped.

I went to Walmart and got him some hand exercisers that he thought would help. I also found a large dowel rod for him to use in bed to stretch his shoulders.

I came home a little early tonight. Needed to buy some groceries and we have another storm coming. We're on the rain side of it and tomorrow there should be a deluge again. I came home between showers and hopefully I can get back tomorrow and early Monday morning without getting too wet.

We have to be at Mayo at 6 Monday morning to register for his biopsy and for some strange reason transport is picking us up at 5. It's only a 10 minute drive and because it will be so early, we'll have to go through the emergency room. He's the 1st case scheduled at 7:30 so we'll be back early. Hopefully he won't be too tired for his therapy after we get back. Because of having to get picked up so early, I'll have to be there by 4:30 which means I'll be getting up at 3:30. Monday's going to be a long day.

Getting ready to call it a night. Hoping tomorrow will be a better day.

Bill managed to get himself out of bed again this morning and his CNA called me before 8. He was very upset but fine. He was not making much sense for a period of time today. Everyone tells me that this is due to the stroke, but all of the literature I have on his medications list this as a side effect of the anti-rejection meds. I talked to the speech pathologists today while Bill was having physical therapy and she explained that the part of his brain that was affected by the stroke is the part that reasons. This explains why he thinks that everyone is against him, but that can also be a result of the prednisone. It's a very fine line we're walking!

He did well with his therapies. He climbed a stair and backed down, first using his right leg to step up and then the left. He was steady enough that he shouldn't have any trouble getting on the table for the biopsy Monday. Speech did some cognitive tests today. He read at 100% and was about 80% with matching a word with the picture. That goes with the difficulty of word retrieval. We're going to play Uno and Dominoes this week-end to re-enforce the matching. He did lots of shoulder rehab in occupational therapy and his grip strength has increased on both hands from a week ago.

The wound dressing was changed and the wound is definitely smaller. The muscle is almost at the top of the wound and the length and width have both decreased. We don't know how long it still will take to fully close but everyone has been impressed with the rate of closure.

I talked to the insurance person today and she told me that between Medicare and Tricare his stay will be covered 100%. Although I was not overly concerned, it was still a relief to know.

We're going to try, at least with physical and speech therapy, to do it without me to see how he does. He did well this morning. This gave me a little free time. They were done back to back so I actuallly had about 1 1/2 hours to myself. I sat in the lobby and had a cup of coffee, and watched him through the window for PT without him knowing I was there. If he can do this without me, I can take this time to run errands or take a walk. I'm needed more when he has nothing going on to keep him occupied and out of trouble! Linda, the OT therapist, wants me to continue working with them because we are to do these same exercises in his off time. He's to wear a splint on his left hand while he's sleeping to keep the hand open. He's keeping it clenched and it's getting very difficult for him to open the hand and straighten his fingers. He took it off after I left last night and may not leave it on tonight, so we'll see in the morning.

All for tonight. Don and Shirley made it home and I'm assuming that Jalena and Phillis have made it also, unless they decided to spend another day in Biloxi. I've got Bill's laundry going and I'm going to doctor my sunburned legs again and go to bed early. Hopefully tomorrow will be an uneventful but good day!

Yesterday was a day of ups and downs. Bill worked really hard in rehab and has made lots of progress. He shaved himself and finally decided to put his teeth in, which made a big difference in his speech rehab! His care meeting went well and hopefully the med problem has been solved, along with some record keeping problems. Since I have to keep a log for Mayo of when his meds are given and how much, we've come up with a system that keeps us both in check.

Bill had an emotional breakdown yesterday afternoon. He's tired of being dependent on others to do the most basic things. He's also blaming "them" for not working with him. He's wanting so badly to eat and drink but his swallowing is not strong enough. I've been trying to find a way to get through that he is the only one who can make the swallowing work. He's been given exercises to do to encourage this, but he doesn't want to do them. A Modified Barium Study has been scheduled for next week at Mayo to see just where his "swallows" are going. If he can start getting that under control, he can start eating. He's lost quite a bit of weight all of a sudden so his "food" has been increased to see if that helps. He is using more calories with being more mobile now in rehab.

Phillis and Jalena left yesterday morning and Don and Shirley are heading out today. It's been good to have them all here. The kids are going to start staggering some visits now. We don't want to overload him with lots of visits back to back or a lot of people here at the same time.

Hopefully we'll have a good day today. Bill's supposed to get a shower instead of a bed bath and it will be the first one since the early morning of September 15, 2011 when he was prepping for the LVAD implant. I know it will feel good!

I'm hoping I'm not as tired tonight as I was last night. We went out to eat after I got home at 7:30 and I wasn't up more than 30 minutes when we got back...I'm such a thoughtful hostess and make sure my guests are taken care of! At least I set the coffee up before I went to bed, what more could they want!

Bill had a good day and finally made it to the machine he had been wanting to work on. His O2 level dropped at 1 point so he was stopped, but he managed to complete all of his therapy. His dressing was also changed on his wound and all of the dressings around his trach site were removed with only a small bandage over it now. He also got his medications early tonight!

I had an absolutely wonderful day with Phillis and Jalena at the beach. It was a lovely day with a brisk breeze and lots of big waves coming in. We walked to Joe's Crab Shack for lunch, and no, I did not eat seafood. I had ribs. Then in was back to the beach. Phillis and I are now looking like the lobster she had for lunch, but if was so nice to just relax.

Bill wanted me to call him late in the afternoon so we talked and then stopped by for about an hour on the way home. Don and Shirley left about 5 and we got there shortly after that. I think he enjoyed the visit with the girls. We got back to their hotel and picked up my car and we are all turning in early. Don and Shirley went out to eat and to the beach, I think. They weren't home when I got home and still haven't come in.

I've put Bill's laundry in and doctored my legs and I'm still so full from lunch that I really don't want anything to eat tonight. Maybe a cold meatloaf sandwich in a little bit.

Tomorrow is our case meeting and Phillis and Jalena are leaving, which will be sad. But I think we all feel better, me because they cared enough to come and them seeing that I'm doing OK and that Bill's doing as good as can be. I'm going to miss them. Don and Shirley may also leave tomorrow instead of Friday. There's supposed to be some weather coming in and if it's going to be bad for driving Friday they are going to leave early

All for tonight. Hopefully the meeting tomorrow will be productive and not too contentious. Things seem to be smoothing out now and I hope that will continue.

Late post tonight and you can blame Phillis and Jalena who came all the way from Arkansas to surprise me! I was so happy to see them and tomorrow we're going to the beach! Phillis finally told me last night that they were coming and when I went to the support group meeting our social worker Jennifer prescribed a day at the beach...so tomorrow I'm taking the day off and going to the beach. Who knows what else we will do! I'm so glad that Don and Shirley are here to stay with Bill. I told him I probably wouldn't see him tomorrow and he was ok with it, at least for the time being.

His day wasn't as good as yesterday. He wasn't as focused and alert until later in the afternoon. He's getting somewhat depressed because he can't eat or drink anything yet. But, the speech pathologists don't think that his swallow is strong enough so that he won't choke or let things slide into his lungs. He has lots of exercises to do, if he will do them. So far he won't with me, maybe Shirley tomorrow.

He did work, grudgingly, in physical and occupational therapy and then spent a lot of time outside. The weather has been great the last few days, not too hot with a nice breeze most of the time.

Hopefully he'll have a good day tomorrow. It's also dressing change day which makes it painful for him. He got his meds on time again tonight so maybe Mayo called and told them the importance of getting them right. I stopped in to see the nurses on the cardiac floor after the support group meeting and asked them for pointers but didn't really get anything that we hadn't already tried. They were all wanting to know how he was doing and are looking forward to seeing him walk back in.

I don't know what tomorrow's post will be like since I'll probably get it second-hand, unless Phillis and Jalena want to see him tomorrow and then we may pop in for a short visit. We shall see what happens. It's gonna be strange not getting up and out of the house early. Hopefully I'll survive!

Bill had a super fantastic day today! He was very alert and awake when I got there and had pushed his call button because he needed to use the bathroom! And he informed Lisa our CNA that he wanted to walk to the bathroom so she got the walker and got him up and he walked to the bathroom! As he was finishing up and getting dressed, Linda the therapist came in and took over and got him in his wheelchair and rolled up to the sink where he washed his face and brushed his gums. Still not putting his teeth in because of the yeast infection, but it's a start! He then went off to therapy and worked hard for 1 1/2 hours, both physical and occupational. They were very surprised at the change between today and Friday.

After he finished we went outside for a little and after coming in speech pathology came in and worked with him for 40 minutes. He did really well then too and they are going to work on swallowing tomorrow. He wants to have something to eat or drink so badly.

After lunch we sat outside most of the afternoon waiting for Don and Shirley to get here. He was very excited to see them. After they left to head to the condo he got settled in bed with his "food" hooked back up. But...praise the Lord...he got his medicine on time and delivered in the correct manner! I was so excited I could hardly contain myself! And I didn't even have to say anything! He also got his wound dressing repacked this morning before I got there and I was surprised that he was so perky!

He keeps talking about working hard to get out of here and I know he's going to prove everyone wrong and do it! He's truly a miracle and God proves it to me every single day. Tonight I can go to bed with a lighter heart and maybe sleep past 4 am!

Sorry for no update last night, just too tired.

Bill had just an OK day. His mind was very cloudy and he was really tired. He did want to go outside a couple of different times and he managed to actually use the toilet in his room.

He talked to most of the kids yesterday and they all said they could understand most of what he said. He also knew who he was talking to.

I saw the PA for the pulmonologist as I was leaving. Apparently they were concerned about the loose cough he's still having (although they hadn't said anything about it me). Anyway, she said that there are no signs of pneumonia, so that's good. Maybe they had tested just because he's been bedridden for so long.

He's going to have a busy day today. Hopefully they will get his therapy out of the way early because it's wound dressing change today. Don and Shirley also come today and he's really excited about that.

Today is also talk to head nurse today about his medications. I just hope it can be done without making it harder on Bill. We shall see.

Again, we are at a point in recovery where the routine is going to be the same. If this is not updated daily don't stop checking. It will just mean that there is nothing new going on.

Sorry I didn't get this updated. Woke up at 3:30 this morning after going to bed at 11:00. I guess still too concerned about the meds to rest easily. Finally got up at 4:30 and managed to get some paperwork done that I had been putting off.

Bill was awake when I got there this morning and very chatty. He said he got his meds, but not under his tongue. I'm sure they are still putting them through his feeding tube. And, again this evening, I left a little after 7 and he still had not gotten his 6 pm meds. The main problem with him not getting them is that the one that goes under his tongue will clog the tube and is supposed to be taken on an empty stomach. So, when they put it through the feeding tube while it is running food affects the way it works. Bill has also been complaining of pain at the site of the tube and I wonder if that is the reason.

He had therapy without me today as I had run out to the store. Apparently there are a lot of incontinent patients as the center was down to its last package of Depends and they were being rationed. So, off to Walmart I go. Also got him a cheap electric razor. His beard has gotten so long in places that it hurts to shave so we're hoping that this will be a little better. Anyway, while I was gone they came to get him for therapy. He said he did what they told him, but he really wanted to walk so he told them he wasn't going to do anymore!

After I got back we got him back into his wheelchair and went outside. It was a great day, hot but a nice sea breeze blowing. Our CNA today was a gem again and she managed to get him onto the toilet instead of the bedpan. I'm going to see if we can get a bedside comode for him. He was using one at Mayo and he hates the bedpan. He's been constipated so he really needs to empty out but he won't do it in the bedpan.

He's becoming obsessed with food! Every day he asks me if we can go out for breakfast or get something to eat for supper. He also said he's ready to get back into the kitchen, and is trying to con me into getting him some coffee! I hope they get his swallow test done soon. The tube feedings apparently aren't filling him up because he says that he's hungry. I'm glad he's feeling hunger, just another sign that another part is functioning.

While we were sitting outside he wondered what his sister was doing. I asked him if he wanted to call her and he said yes, so I dialed for him. They talked for quite awhile. Shirley and Don are coming on Monday and I think it will do him some good. He's also ready to see the kids, but we'll have to be careful not to overload him or interfere with his rehab. He thinks he's going to be out of there in a couple of weeks, yet he realizes that things don't work, although things that weren't working yesterday are working more today, so who knows.

Ok, I think I've hit all the highlights. If any of you that I haven't already talked to or messaged have any suggestions on getting the meds straight, please let me know. It's driving me bonkers!

Sorry this is so late and it's going to be short. He had a fairly good day, lots of therapy and he did pretty well with it. Had the wound vac dressing changed and I'm amazed at how it looked. I could actually see muscle now instead of a deep hole.

Biopsy results again showed no rejection! Everything looked good.

There are still a few issues concerning his meds and I will update this again in the morning. I've been on the phone getting advice all evening and I'm so tired now I can't see straight. Goodnight!

Had to go back to the center last night. Bill rolled out of bed and bumped his nose. He was OK and his wound vac and feeding tube were intact. He was very confused and upset so I told them I would come back and try to calm him down.

He basically just wanted to leave the room. He's tired of being in bed and everyone is poking and prodding and moving him here and there. He was also confused mentally some and talking about computers. Some of this is still the effects of the anesthesia and I'm starting to believe that some of it is his medication. I have printouts of all of his meds with side effects so I'm going to read through those again today.

I stayed until he went to sleep and hopefully he stayed asleep for awhile. I wasn't called again so he must have stayed in bed. I was impressed that I was called within an hour of it happening. In that time they had assessed him and treated his nose. It did not bleed, was just a little swollen, and what they thought was an injury may have been a little scratch that was already there.

So, a short night again and got up early to do my bookwork that I didn't do last night. And so it goes...Don and Shirley will be here Monday so maybe I'll force myself to take some time off. But, when your heart is someone else, it sometimes does more harm than good. We'll just see how it goes.

Long, long day today, but pleasantly surprised at 6:30 to find Bill bathed and in the process of getting dressed for his trip to Mayo. The shuttle was fantastic and got us there right on time. Biopsy went well and as usual we will have the results tomorrow.

I told Dr. Yip and Stephanie our coordinator the mix-up with the medicine and she gave me a med list when he was discharged with explicit instructions on how to give the Prograf. She also called them and explained how and why the drugs are given and when to give them. When his nurse came in at 6 to check his feeding tube, I had to ask her to give the med and reminded her that it was to be given under his tongue and not through his feeding tube. When she brought it in she said that since it was a capsule it had to go in his tube. I explained step by step how it was to be done and why. This drug will clog the tube and it has to be given on an empty stomach, so putting it through the tube, into a stomach that is continually filled doesn't make sense. I know that these instructions were on the med list that I handed to that very nurse! If it keeps up I'm going to ask that I be allowed to administer that drug myself until he can swallow.

There is a meeting scheduled for next week about his care with all of the nurses, therapists, dietician and social workers. Hopefully things will be resolved by then. There is also a lack of communication there between departments. Our cath lab nurse called the head nurse (I listened to the conversation) telling her that Bill was to rest all afternoon and evening and do no therapy today. This is because they again had to go through his groin. In the 1st 2 hours of getting back to the center he was weighed, saw 2 CNAs, 1 RN, 2 therapists, a social worker, activities director and had a chest xray. Except for the chest xray I banned everyone from the room meeting them at the door. I had all of the lights out and the blinds closed with no sound so that he could sleep. I may make a Do Not Disturb sign for the door. I don't think that will go over well.

Tomorrow he's supposed to have his wound dressing changed again and I'm going to tell them to do it in the afternoon so that he can have therapy in the morning or he's going to lose the ground he has gained. I told the therapists this and they were going to let the nurses know, but with the communication problem between the departments, I don't know if it will get done.

Had a long talk with Mary Rose and my friend Pat who has been a CNA in nursing homes and they both gave me some good tips. Some I was already doing, such as making notes of these things. And, my friend Jan has given me some other good pointers for dealing with the staff. I'm hoping that things will smooth out since we've only been there a day and a half.

Oh, before I forget, Mom, thank you for the tote bag and thank Sandy for me. You're right I have lots of them, but none with pigs on them! Since I know you read this daily, it's easier than a separate email and I know you understand! I love you!

OK, enough of the personal stuff. I have some bookkeeping to do that has to be mailed back to Arkansas by Saturday so I'd better get busy before I fall asleep at the keyboard. I'm almost too tired to do it tonight. If I start making mistakes, it may be better to do it in the morning, or take it with me. So far I can't get internet access there so I don't know. Anyway, goodnight everyone!

Well, let's just say I may have spoken a little too soon about the new place. Already a major medicine mix-up with an anti-rejection med. I'm going to clarify that with Stephanie tomorrow for his biopsy. I know he didn't get a bath today except for washing his privates after the wound vac was attached. And coming home I got to thinking that he may not have been check for any bowel movements all day. I ran out for a little this afternoon while he was sleeping so I'm not sure. But I know that while I was there he was not checked.

He was in a great mood today and cracking jokes with me. When the speech pathologist asked him what his wife's name was, he countered with "which wife". But he did tell her my name after a while. He didn't do much therapy because they wanted to walk him right after they did the wound vac which is very painful and requires pre-medication with Percocet. So he was pretty loopy.

All for tonight. Even after sleeping in today I'm tired and have to be there by 7 to get him on the shuttle by 7:15 for check-in at 7:30. I'm going to be there earlier than that 'cause I have a feeling they are just going to send him in the same clothes he has on. I don't think they are used to patients who are almost totally helpless. We'll see in the morning, I'll try to give them the benefit of the doubt in getting into a new routine with a new patient.

Very long day today. Have only been home about 20 minutes and I'm wolfing down some dinner. Bill finally got moved about 6 this evening. The facility is nice and the nurses so far were great. He's totally exhausted so they decided to put off re-attaching the wound vac until in the morning.

I've got to gather him some clothes and take some personal items for him. I'm taking his radio and his 2 favorite blankets. The one thing I'm not so keen on is his bed. None of their beds have rails. It does have an alarm and they lowered it to almost on the ground and put padding down so that if he tries to get up the alarm will sound when he sits up and if he should manage to get out, he hopefully will fall onto the pads.

It was an emotional day for me saying good-bye to the nurses and techs. They were all so wonderful and took such good care of Bill it was hard to say good-bye. But, we will go back to see them when he can walk down the halls with them.

It's going to seem very strange not to get up at 5:30 in the morning. I asked what time I should be there for them to do the dressing and she said 10! I don't think I will wait that late because Bill is still a little overwhelmed and mentioned that he can't control anything. But, I think I'm not going to set the alarm for the first time since May 2. He's also a little disoriented so I don't want to wait too late to go, but I'm going to try to sleep in a little and then get his clothes packed. He's also going to be evaluated by the nutritionist and therapists and see a podatrist at some point to get his toenails taken care of.

So, sorry this is so late. I didn't take the computer today since it was just one more thing to haul around. I'm calling it a night after a couple of phone calls. I'll let you know how it goes tomorrow.

Really tired tonight. It was an emotionally draining day. It broke my heart to see Bill crying today, but we worked through things. I think he's going to go through a lot more of that. But, he's still talking up a storm and surprised his speech pathologist since she had never really heard his voice!

The Foley has been placed again and we're all hoping that the nerves will start working again at some point and it can be removed.

The nurses have named him favorite patient and they are all pulling for him. Even other patients families come to the door to watch him walk and encourage him. When our nurse from today got relieved she came in to tell us good-bye because she is off tomorrow. It's going to be a hard day for me tomorrow, telling the staff good-bye. All of them are so wonderful and have taken such good care of him for so long, it's like losing a member of the family. I told them that he's going to come back and dance down the halls with all of them!

Hopefully we will get moved tomorrow with no problems. I haven't heard anything from the case manager since early this morning. I know that his specialty meds have been ordered and will be sent to me because the Healthcare Center may not be able to get them.

I'm really tired now so heading off to bed. I'll let you know how tomorrow goes.

Big day again so far today! Trach is OUT! He's also walked 170 feet. The dressing for the wound vac has to be this afternoon so pain meds are already on board. They are also going to have to put the Foley catheter back in. He's still unable to urinate and it's torturing him to straight cath him every 6 hours. There's a risk of infection either way, but the Foley is only torture once and since he already has the pain meds it won't be so bad.

We have a glitch with moving him. There is no way around the problem with his biopsies with the center I chose and my second choice won't take him with the feeding tube. So, there's a facility on the Mayo Campus. It runs the gamut from single family dwelling to condo, to assisted living to skilled nursing and hospice. It's 5 minutes away and I toured it this morning. I was please with it and I can be there as much or as little as I want. The rooms were very nice, some with separate sitting areas and some with balconies. I also got to see the therapy rooms and they were very nice. It was also recommended by Tina, our coordinator.

When I got back to his room, he looked at me and started crying saying he wasn't good for anything and he couldn't do anything. So, we've had "the talk" about what has happened to him and what is still going to happen. It was a pretty intense, emotional, morning, but I think it will ultimately turn out to be the best thing for him now. He also cried more with the therapist, but I think he really likes her since she is very encouraging and can get him to respond to her.

All for now, will update when the other stuff is done. They may try to have him walk again this afternoon to see how he does.

Trach has been reduced. Did a lot of coughing but the dr didn't get a lot of junk when he suctioned deep into his lungs. After all the coughing he has relaxed now and is sleeping, with good sats. The dr. said the plan is to see how this goes today and in a day or two take it out completely. I told him he is to be discharged tomorrow and he said if his numbers stay up and he does ok they could take it out tomorrow morning before the transfer.

I have a feeling that he won't leave until Tuesday. It's going to take a little to get everything coordinated between the 2 hospitals. But, today's been a good day so far. And the last few days have been a great lesson to me.

After all the turmoil of Friday, I, again, turned everything over to God. I have a problem with giving it to God and taking it back as soon as the amen is said. This time I left it with him and woke yesterday with the clear mind to make the decision that I had known from the beginning would be the right one. Today, the 2 small devotions that I do daily was on trust...duh! So, I finally got the message, again, and now things are just falling into place. Okay, that's my preaching for the day. All I can say is thank you Lord for your blessings! And thanks to all of you for your continuing prayers on our behalf.

Bill's had a busy morning and it's not finished yet. He has had his feeding tube replaced and is back in the room. We're waiting on the lung dr to come back. He's going to reduce the size of the trach! That's a major accomplishment! We found out that the balloon that inflates at the end of the feeding tube to hold it in the stomach deflated. That's why he didn't feel any pain when it came out, but did feel pain earlier in the day when it was working out.

When I got here he started talking up a storm and told me he wanted some soup. He said he had a terrible night because of all the military stuff! I know they were in a lot suctioning him so maybe that's what he meant. When he got back from have the tube put back he wanted to know if we could go out for breakfast. He wants to go to the Waffle House and get scrambled eggs with cheese, sausage and a waffle. I told him that as soon as he could do that we would go.

I'm feeling better about my decision for placement and I told Dr. Hosenpud that it's more for my peace of mind that he go to the acute care hospital until the wound vac is gone. And, the aide that sat with him last night said that she did her clinicals there and that it was a good place for him.

As soon as the trach is done I'll update this again. So far so good!

Well, I thought I was done for the night. But, as we were moving Bill from the bedside comode to his chair his feeding tube fell out. We thought at first that it had just disconnected between the "feeder" and the tube, but the tube came out of his stomach! So, now he has a hole in his belly! The drs. have consulted and Dr. Hosenpud was not in the hospital so Dr. Keller, one of the lung transplant drs. came and looked at it. He has consulted with the GI docs and they will probably replace it tomorrow. They have now had to change his anti-rejection meds to IV to go through the PIC line instead of through the feeding tube. Poor guy! He's exhausted from all the walking and moving and then prodding and poking. He's finally back to bed and asleep and she's going to have to wake him up to give him his Prograf which goes under his tongue! When the sitter gets here, I'm going home!

I'm pretty sure that he's going to go to the acute care hospital, at least until the wound vac is done and maybe until the feeding tube is discontinued. Then he can go to the rehab hospital we originally wanted him to go to.

I toured it this afternoon, and Mayo it ain't! It's a little shabby, but clean. The rooms are small, but most of them are private and the room he would be in is where they would be working with weaning from the trach and the respiratory therapists have their workroom right there. There's a good size cafeteria that is open 7 days a week, only until lunch on week-ends, but that is better than Mayo since theirs is closed on week-ends. They would be able to administer his anti-rejection meds and I could bring them in and give them to the pharmacist since Mayo Speciality Pharmacy is supplying those.

The only glitch is that they contract with another hospital for testing and such and there may be a problem getting him to Mayo for his biopsies. I need to talk to Tina and the case manager about that Monday. I felt pretty comfortable with it. And, his physical therapist that he likes so well came in today and she said it's a good place (although she's not supposed to voice an opinion).

And speaking of physical therapy, after Bill did his leg stretches, he walked from his bed to his door, 12 feet. After a little rest in the wheelchair he walked out the door into the hallway, 10 feet. Another little rest and he walked a whopping 45 ft in the hallway! He did so well that he got to come back in the room in the wheelchair! Dr. Hosenpud said this morning that he would like for him to be able to walk 30 feet so he should be pleased to see that report!

I'm going to try to see the other place I'm considering tomorrow. It's close to the one today, I was just in the wrong lane and didn't feel like turning around!

This is probably all for today. I don't think anything else is going to happen and I don't know how much longer I'm going to stay. I should stay until the sitter comes, but I'm getting really tired now.  So, I know there was lots of praying going on last night and I thank you for them. I'll let you know how tomorrow goes!

Even after a pretty sleepless night, and a very early morning, I've made some decisions and feel at peace with them. One of the places he was referred to is a long-term acute care hospital with an extensive rehab program. They are also wound care specialists. I feel that he still needs the acute placement over the skilled nursing. I'm going to try to go by this afternoon and speak with the case manager that was contacted yesterday. I also just saw one of the physical therapists here who really got Bill moving and he thinks that in a skilled nursing center he would just get pushed aside.

My main concerns now are the medical problems and not the physical disabilities. And, whether it be insurance or the hospital itself, Mayo is a speciality hospital. They don't have just a "regular" floor for sick people. So, from their point of view, Bill does not need to be here.

I talked to him about it a little while ago and I think he understands.I also told him that it's not a nursing home but a place that can care for all his "stuff" and still help him get stronger. I told him I was going to go by today and he said he was just going to sleep this afternoon anyway, so it was ok with him.

He started out having a great morning. He was very alert when I got here and we put his valve on and he started talking up a storm. His nurse and PCT are both named Lisa, so it won't be hard to remember who he has. We've had the tech before, when he had the LVAD and she's a gem. They got him up early and in his chair, but he started complaining of pain. He also said he needed to use the bathroom but didn't want the bedpan because it hurt. So, we brought out the bedside comode and he used it. But, he really started complaining of pain in his belly and groin and was really nauseous for awhile. Dr. Hosenpud has ordered, or is going to order, some meds for that. He's had a Percocet and is feeling better back in bed. He keeps going to sleep and then his O2 sats drop and he starts beeping. He just can't win!

Thanks to those who voiced an opinion. They really helped and I feel peaceful about the decision. Hopefully they can take him. Dr. Hosenpud said that if we have to wait until Tuesday since it was all done so late on a Friday that it would be fine.

Bill's getting gurgly so I'd better go suction up the secretions. I'll keep you posted.

Sorry the update is so late tonight. It's been a very emotional day and I hope I can see long enough to get this updated. I'm going to apologize in advance for any typos.

Bill had a very painful day. They had to change the packing for the wound vac. We didn't know when the wound nurse would be coming so he wasn't given his pain medication enough in advance to really help. The wound is healing well, but it's going to take quite a while to close. He was also tired most of the day and wanted to sleep.

The only therapy he really saw today was physical and the only thing she did was sit him on the side of the bed and had him stand to pivot to his chair. That's the same thing she did yesterday except she didn't put him in his chair, she put him back to bed. She did no leg exercises or stretches at all. This was a different therapist than the one who has been working with him. I told the case manager about it today, especially the fact that she's about 6 months pregnant and probably shouldn't be working with patients. I really only brought it to the case manager when she came in to talk about going to the rehab hospital. She said she had read the pt notes and saw that he wasn't walking so he wasn't ready for rehab. I told her he walked Wednesday across the room and she was very surprised.

The reason she came to the room is because Bill is being discharged Monday. The rehab hospital won't take him because of the wound vac. Of course he still has the trach, feeding tube, still hasn't been able to urinate on his own or control his bowels. I know that's way to much information for most of you but just stating the facts. The speech pathologist wants to start decreasing the cannula size, but Dr. Hosenpud apparently doesn't share that opinion and indicated to the case manager that the trach and the feeding tube are both permanent. Nothing has been said to me about it.

Anyway, since he can't go to the rehab hospital, they are now looking at skilled nursing centers. From the list they gave me, and from what I can find out online, the top 2 they have recommended are just glorified nursing homes. The time spent with RN nursing is less than 30 min with most of the care coming from CNAs. I'm not happy that they waited until Friday afternoon to start looking for a bed. To top it off, they want me to transport him to save the cost of an ambulance. Now, I'm already paying for someone to sit with him in the evenings, I think I can afford the $100 co-pay for the ambulance. (Can you tell I'm a little angry)? He also has to come back to Mayo on Thursday for his biopsy.

Bill knows something is going on and I'm going to explain it to him tomorrow. I'm terrified that when he realizes what kind of facility it is he's just going to give up.

Anyway, I've cried most of the day and evening and I go from sad and scared to really angry. It seems like Mayo is saying that they fixed the problem he came to have fixed. And, while they're sorry he's had all of these complications, they're satisified that they did their job.

I'm so tired that I can't think of all the things I need to ask, like can this place handle his anti-rejection meds and make sure they are given on time.That's just 1 of many. So, I need feedback. If this was your husband/wife, what questions would you be asking. For family members, I would ask that you just email me or comment here. I'm too emotional to hold a coherent conversation. The kids and I have been texting all evening to get their input. I love all of you, but talking is not an option for me right now.

Sorry this isn't an upbeat update. But, this is how the day has gone.

Another good day! Bill was able to use his PMV for quite a while off and on all day, although when he really wanted to be chatty he didn't have it on, and didn't want it on. He was awake most of the night again according to his sitter and tried to get out of bed again. He finally cooperated with occupational therapy and combed his hair and did lots of fine motor skill tasks. His left arm is definitely much weaker, especially his hand. It will need lots of rehab. He also told the speech therapist that the left side of his face, which has a slight droop, is numb. But he managed to move items from one side of his mouth to the other with his tongue, which is a large part of being able to eat. She was going to suggest that his trach cannula be reduced now. All of his secretions are plain saliva that drains when the trach collar is not capped, so there's no "junk" in his lungs. He also painted his own mouth with his medication for thrush.

Dr. Yip said that his biopsy is scheduled for Thursday and if a facility can take him now, he wants to go ahead and have him transferred Monday or Tuesday. He would then go back to Mayo for his biopsy. He also made me cry today. He said I had been the topic of the department meeting yesterday and the entire team thinks I have done a wonderful job of being at the hospital every day and doing what I can do for Bill, while making sure the staff does their jobs. He thanked me for being so dedicated. I don't understand what is so special about being there every day. He's my husband and the most important person in my life. Why would I not want to do whatever it took to care for him and be with him! I said as much to him and he said I would be surprised at how many spouses say forget it and leave. That is something I just don't understand. I know that my mom and sister think the same way. Our social worker Tania came in this afternoon and said the same thing. Anyway, he made me cry, although that's not hard to do these days.

I don't know if Bill has realized what we've been talking about when we talk about rehab. So, I guess that I'll have to bring it up in the next few days. Hopefully he'll take it well. I know he's been thinking about what has happened and trying to put things together.

We also got some sad news today and I'm not telling Bill for awhile, I think. His step-brother Jeff passed away last night. We had seen him 2 years ago when we went to New England and he had been ill for several years. They weren't close so I think I'll wait a little while to tell him.

All for tonight. There were thundershowers all night which kept waking me up. It's rained most of the day and looks like it's going to continue through the night again. We need the rain down here, but I sure hate driving in it!

Today was a good day with major accomplishments. After the anesthesia wore off Bill was very alert and interacted with everyone who came into the room. He also wore his PMV and was able to talke quite a bit. He finally told me that it was hard to breathe and his O2 sats dropped below 90 so we took it off. He did a little physical therapy but they didn't want to work him too hard after the procedures.

He has "graduated" to a different bed. He had been in one that moved air through constantly and was very noisy. He's now in a regular hospital bed that has an air mattress on it that still moves air through it, but it's not as noisy and is heated. Bill told me that he wanted his PMV back on and told me he didn't like this bed because it was hard! So, Jim, his nurse was going to try to soften it some. He also said that he was hungry! He hadn't mentioned food at all in the last 5 weeks. Of course his feedings were stopped at midnight on Monday/Tuesday and haven't been started yet. The order to restart has been written, but the new tube can't be used until about noon tomorrow. Jim said he was going to balk at putting another nose tube in. So, Bill is just going to have to suffer, but I think he'll be OK. He also wanted to try swallowing his meds this evening, but he has to be able to swallow well and he's not there yet.

He's getting his sense of humor back. I went to the bathroom and he told me that he hadn't been good while I was gone, he and Jim had played poker! But, he wouldn't hand over his winnings!

I got a lesson in trach care today and that's not something I really want to do. It's a lot scarier than doing the drive line and dressing changes from the LVAD. But, it will be done, whether I want to do it or not, cause that's what I do.

I think now that he will be moved next week after his biopsy. Dr. Yip was checking to see when it was scheduled. They have been on Wednesday and Thursday so I'm thinking it will be the end of the week. That gives him a full week then to get stronger and for me to check out the place and meet with the staff. I still don't think that Bill has comprehended that he's being moved to another hospital, but we will deal with that when the time gets closer.

All for tonight. When I signed in tonight, I was amazed to see that there have been more than 8100 views of the blog. I know that a lot of them are my own since the current post comes up for me too, and I know some of you check it multiple times a day. But it is still hard to believe that there is so much interest in our journey. Thanks to all of you for supporting us through this, it means the world!

Back in the room. Everything went fine and the old tube has been removed. He now looks more like himself. The wound vac has been attached and will stay attached and working until the wound is healed or the drs determine that it can be removed.

The new tube is working well and he has had his morning meds. He hasn't gotten any "food" yet but I'm sure they will start before long since it's been nearly 36 hours without nutrition.

He's still in and out and says he has some pain but doesn't want any pain meds yet. So, we'll just keep an eye on him.

I think that he believes that I've followed through on a threat to get all male nurses. Monday and Tuesday his day nurse was Alan and his night nurse was Corey. Today his nurse is Jim! I like all of them and Jim had been his nurse with the LVAD. He said he was very particular with dressing changes and would be picky when I did it. After it was done I asked him how I did and he gave me an A.

Dr. Yip has tried to come in twice this morning. The first time Bill was gone and the 2nd time the wound nurse had just started to remove the dressing to start the vac. But since there are so many transplant patients here right now he'll be on the floor for awhile.

Another post already. He's in the GI lab to have the feeding tube placed. They said it should take about 20 minutes. Hopefully they won't have any problems. I've just come back to his room and his nurse brought in the wound vac so as soon as he gets back that will be attached. I don't know if it is only used for a certain period of time each day, or if it is something that will be attached until it is healed.

More when he's back in the room.

Good Morning Everyone! It was a short night, I'll blame my sister for keeping me on the phone. (And since she's way far away from me I can). I know, I know, payback.....Anyway, I enjoyed the conversation and got the information I knew only she would have but got to bed later than usual.

Bill had an uneventful night. After his escapade from the night before of getting out of bed, the hospital brought in a sitter. Florida law restricts hospitals from putting all 4 bed rails up. They consider that a form of restraint. So, the only other alternative was to have someone in the room with him all the time. Tiffany was really nice and she said he didn't try anything.

I think he's still rather groggy from the procedure yesterday, and he's had a mega dose of Tylenol. The wound has been checked by the surgeons and the wound vac will probably be connected today. He said it will take about a week it to heal, but that is compared to months before they technology was available.

He's still NPO so I think that the NG tube will be done today. Dr. Yip hasn't been in yet to make the final decision. It is scheduled but can always be cancelled. This will allow the tube to come out of his nose and since that is 1 less thing in his throat it will make it easier for him to start swallowing and eating and talking.

With everything planned for him today, the wound vac and the tube placement, I don't know how much therapy will get accomplished. Dr. Yip thought that he might get set back by a day, which could be why he wants to get the tube today so that all of the procedure recovery happens at once.

I think I've gotten this up to date. I was too tired last night to even take the computer out of the case. But, I slept well to the sound of rain dripping off the palm tree outside the bedroom window. I also packed up the LVAD equipment and brought it in. I haven't packed the supplies yet, too tired for that, but at least got the gear in the car. I'll get a wheelchair later and take it to the transplant floor.

Surgery is over and everything went well. Dr. Agnew said it was no big deal. They should be able to put the wound vac on tomorrow. He's in recovery now and should be back in his room in about an hour.

After discussions with the team leaders and one of the nurse case managers, it was decided to have a sitter with Bill all night so there's no repeat of last nights escapade. Although tonight I think it will be pretty safe to say that he will stay in bed. But, it will make all of us breathe a little easier!

Dr. Yip is thinking about doing the NG tube in the stomach tomorrow but is going to wait to see how this surgery went. It may be too much too soon for him, although Dr. Agnew said that he stayed very stable during this surgery. I don't know what all the other one entails, may have to call my sister about it.

Finally got him for surgery about 4:30 and took him from pre-op about 30 minutes ago. They told me that it would take about 30 minutes to get him ready and then about an hour for the surgery and another 30 minutes after, so it's going to be a long evening.

Dr. Agnew explained the procedure and they are going to clean the area out, and then take part of the muscle that runs along the thigh loose from the pelvis and move a flap of it over the veins and artery. That way they are covered and the wound vac can be used. This is a device that is attached and, I think with air sucks the wound closed. He said it cuts healing time by 1/3 to 1/2.

When I was answering questions for the anesthesist he asked if I was a nurse! I told him we've just been here a long time and I listen to the drs and nurses discuss things. After all, it pertains to the most important person in my life. Besides, I'm nosy! He and the nurses also commented that I was very calm. I told them there wasn't anything to be upset about, just to go with it. It doesn't mean I'm not concerned or worried...I'm a wife, that's my job!

Anyway, when I know anything more I'll update again. Keep the prayers going this evening.

HE WALKED!!! Bill had an eventful night and so far an eventful morning!

When I got here this morning, Bill has his boxing glove mittens on. Apparently during the night his nurse Corey looked in on him and...HE WAS STANDING BESIDE THE BED! Apparently he needed to use the bathroom so he got up! Because his bed is a special one that keeps air circulating and moving, it is not hooked into the system for alarms that all of the other beds are. So, they had to leave his door open all night and put the mitts on so that he couldn't use his hands to pull himself up. He also pulled off his oxygen and probe!

When physical therapy came in he sat well and, twice, walked from the middle of the room to a wall. The only reason he did it twice was because I was talking to the speech pathologist and missed it! The occupational therapist was here at the same time and she saw how strong his arms really are. He hadn't wanted to work with her, but she's got his number now. She's going to get some wrist supports and some hand exercisers to build some strength.

Speech may come back later this morning. He's really tired now and sleeping. His procedure is not going to be until this afternoon so I don't know how he'll feel afterward and if he will be able to get up. She brought me a "biting" tool for him to use to  practice moving his tongue around in his mouth, kinda like a teething ring. But, he has to learn how to bite again and move his tongue to move food around.

As I said, his procedure is going to be this afternoon sometime. I'm not sure when, or how long it will take. Ann also wants to take him back outside today, this morning if possible. It's hot and muggy today and is supposed to rain this afternoon.

So, it's only 10:20 and we've had a monumental day! I'll let you know when the procedure is finished.

Bill now has sunshine privileges! This means he can go outside so we sat by one of the ponds with a favorite nurse for about 30 minutes this morning. I don't know if he enjoyed it, but I did. There was a lovely breeze and it hadn't gotten too hot yet.

He's had a much better day. He was clear-eyed this morning when I got here and responding well to everything and everyone. He's had some pain today, especially when they repacked the wound. Hopefully they will still get it taken care of tomorrow.

Dr. Yip and I discussed putting in a permanent feeding tube in the stomach. Of course if he gets so that he can swallow and chew I would assume that it could be removed. If will also be done this week and will be coordinated around the other surgery. We also discussed moving him to the rehab hospital. Of course that will depend on how these surgeries go, but it will probably be within the next week. I don't know if Bill has comprehended that he's going to another facility, but we'll deal with that when the time gets closer.

All of the therapies have been in today. He cooperated with all but speech and he was just worn out. She came very late this afternoon. She's going to try to come earlier tomorrow. Of course, a lot of the therapy will be determined by the surgery. He sat well and moved his legs well for physical therapy and shuffled 3 steps to his chair. He did some work with occupational therapy and one of our other favorite nurses came to visit and she worked his hands and arms a little more.

Some of our favorite nurses who weren't aware of what had happened have stopped in to see him today. And others are planning on coming by. His nurse today is the one he had the day he came down from ICU and he hadn't seen him for more than a week. He was amazed that he had progressed as much as he has. Another favorite nurse from ICU is floating this week and working on this floor today and has promised to stop in when she can.

We were told today that there are 12 patients on this floor that the transplant team is watching. Not all are transplants, some are LVADs and some are waiting for transplant. But that's a huge number. They usually only have 4 or 5 at 1 time. I know there is another LVAD patient in ICU waiting on a bed down here and an LVAD being implanted at this very moment.

All for now, Bill needs to be suctioned. I'm getting pretty good at sucking the stuff up.

Bill's day didn't get any better and he was very tense when I left tonight. He grimaced several times as if in pain, but when we asked he always said no.  He didn't want to cooperate with the nurses and his medications. He ended up sleeping most of the day and wasn't interested in anything. I'm starting to wonder if he isn't getting a little depressed and since he can't express himself it's frustrating him that much more.

His nurse the last 3 days has been wonderful with him. She talked to him about everything that was going on and asked permission before doing things. It's too bad she's now off until Friday! But, everyone on staff here is wonderful. They are all very dedicated. One of the housekeepers brought me a pocket notebook and pen today with a note that says "You are such a wonderful wife and friend. Keep up the good work. I hope he gets better soon. Love your housekeeper Smiley". Such a small thing, but very touching. Even when she hasn't been our housekeeper, she would stop in or stop me in the hall and ask how we were doing.

All for today. Hopefully we'll both get a good nights sleep and have better days tomorrow.

Good Morning!

Bill seems to feel a little better this morning, although he's wanting to sleep, or at least keep his eyes closed and ignoring us. The surgery for his leg will be Tuesday. The incision won't be closed, a special sponge will be sewn in IF they can find where it is leaking. There is some bacterium now so he's going to bestarted on antibiotics to catch any infection before it can get started.

The biopsy was fine, no signs of rejection. As far as the heart is going, everything looks good. We just have to work on everything else now.

He's been bad this morning, ripping off his oxygen and not opening his mouth to have his temp taken. He's not going to be happy when she has to repack the wound.

We're going to try the speaking valve today after respiratory comes in to make sure he's breathing ok. She didn't want to wake him when she was in earlier this morning.

All for now, it's time for morning meds and lots of goodies. I'll update again after we see how the rest of the day goes.

Bill doesn't feel fine today. He's in some pain and just generally looks like he doesn't feel well. His Foley catheter came out this morning which normally would make him feel a lot better. He indicates that he's in some pain and he's been getting Tylenol since last night. His secretions from the trach are also thicker than they have been, but his O2 sats are staying up.

I talked to Dr. Landolfo this morning and he looked at the incision at the groin. He thinks it's going to take a "small" surgery to close it. They will have to move some muscle over the area to close it. Right now it is still packed and it really hurt when they were messing around with it. I don't know when this surgery will be, probably the first part of the week. I doubt that it will be done this week-end.

Dr. Yip didn't say anything about the biopsy results, but one of his anti-rejection meds has been cut in half, so I would think that there are no signs of rejection and they are starting the tweaking process. These meds will be adjusted up or down for the rest of his life.

All for now. We were going to try the speaking valve again today to see how he does swallowing, but since he feels so bad I don't know if he will want to work with it. It doesn't seem like it's been a month since the transplant, but it will be tomorrow. They say time flies when you're having fun, and while this hasn't been fun, it has gone very fast.

"I FEEL FINE"!  Those were wonderful words to hear today! He did quite well with his speaking valve today. He swallowed a piece of ice, although I think he aspirated more of it than not, but he kept the valve on for 1 1/2 hours and did quite well swallowing and trying to talk. Dr. Patel came in during this time, and he was just amazed. After Bill said this, he started to cry, which got to all of us. Dr. Patel even got down on his knees in front of him to talk to him about how great he's doing. We're going to keep practicing through the weekend to see how he does. His O2 saturation stayed up most of the time he had the valve on, which is also a good sign.

We still don't have the results of the biopsy yet, but, like last time, if there had been something wrong that could be detected immediately, we would have know yesterday. He had an echo done today and it was good. Dr. Patel did order some fluids thinking that his blood volume was a little low, but not low enough to need to be given blood.

He stood for about 30 seconds with the help of a walker and 2 therapists today and instead of sitting in the cardiac chair, he sat in the regular recliner. They have a portable lift, like the permanent crane system in ICU, to move him back to bed and that was done easily when he was ready for a nap.

He got the rest of his staples out today and the chest incision looks really good. Just put a few steri-strips on to make sure it healed. The incision in his groin had been puzzling the nurses this week. It was draining a clear fluid that you could see run out. Dr. Patel had the surgical team look at it and Rob, the technician, took the staples out. You could see the fluid pouring from the site. He then pushed down on it with a q-tip and the entire incision opened and gushed like a gyser. He explained that sometimes the lymph nodes in that area build up with fluid and even though it looks like the incision is healing, it is only the skin that is healed. He looked down into the wound and could see veins so they can't use the wound vacuum that sucks the area closed. (Phillis, you know about this all too well). So, it is packed with gauze and bandaged and they are just going to keep repacking it until it starts to close. It sounds really gross, but it isn't and there is so much fluid that there is no chance that the gauze will stick and cause more problems. When it does dry, they will use wet packing.

He's been very alert today and is now starting to flirt with the nurses more. He's in love with Elizabeth his PCT and I think she's a little in love with him too. He showed me 4 fingers a little while ago but I don't know what he meant by that.

All for today. As late in the afternoon as it is, I don't think we're going to see occupational therapy today. And I probably won't be here much longer tonight. I still haven't slept well this week, even took a sleeping pill last night. Maybe since I won't come quite as early tomorrow I'll sleep better. The doors aren't open as early on the week-ends and I will get a better parking place. So, probably won't update again until tomorrow. Hope everyone enjoys their week-end!