Bill is finally showing signs of improvement as far as his cold goes. The Benadryl and Musinex have been working. He's sleeping better at night and coughing less. Today his sinuses have not drained as much either.

His PT is going well and he has a consult for OT next week. When they called with that appointment he got rather upset thinking they were coming up with other ways to just keep us here forever. He had not had a mood swing like that since last week. Again just refusing to discuss it past a certain point worked and he finally worked himself out of it. I did remind him that this was his decision to have the transplant and that he agreed before that he would comply with all of the requirements. Sadly, he doesn't remember that, as he doesn't remember a lot of what has happened. Maybe that will come back but I doubt it.

Today was laundry day since there was no therapy and Bill's therapy was folding clothes. Didn't do a great job but it's his underclothes and socks. But, he gave it a good try. He then put the pillowcases on the pillows so he got a little work-out. We also took a couple of small walks to the mailbox and back. It was too hot to do much more than that, but he walked for the amount of time they wanted him to walk.

Since there's not much going on with us as far as day to day goes, I'm going to just throw some things out to you. Several people have asked if we knew how much everything has cost. We finally got a statement today that covers the transplant. I got online and looked up all of the statements and added them together. The grand total so far is $1,203,784.40. We have paid less than $1000 and do have a balance, but I'm waiting on some EOBs to see why Tri-care didn't pay on them. One good thing about the new healthcare law is that lifetime caps were lifted. Otherwise we would be looking at a huge balance. We are also fortunate to have the Tri-care. Between Medicare and Tricare we have paid very little. So, if you hear of a fundraiser for someone needing a transplant, most likely their insurance isn't going to cover everything. Give if you can.

I was also looking at the invoice for his medications. Our co-pay monthly for those is $36.02. Medicare and Tricare pay 100% for the anti-rejection meds. If we had to pay for the meds it would cost $908.93 per month for a yearly total of $10,907.16. That is more than a lot of people live on per year. Another reason to be thankful that we have the insurance coverage we have.

OK, off my soapbox about the cost of transplants. I hope everyone has a good Labor Day holiday. Monday we will celebrate our 22nd anniversary. Each anniversary is special, but this one is especially so. All for tonight!

Our week-end wasn't that great. We've both been stuffy and Bill has been coughing a very wet cough. I don't think it's anything to be overly concerned about. He's not running any fever and the cough comes and goes. It seems to be more linked to sinus drainage, but nothing is stopping the drainage.

We went to therapy this morning and he did well. He has gotten much steadier walking than he had been. He was rather grouchy this morning because I wouldn't let him eat anything until he had his "empty stomach" meds.

This afternoon he didn't want to stop eating! I had to make him stop to take his meds before we could have supper. He ate well and seems to feel better this evening now than he had all day.

We're back into the days when not much is going to be going on so don't be alarmed if there aren't any entries. I don't think you want to read about the TV shows we're watching!

What a nice week we've had! We didn't do too much Weds. or Thurs. Bill finally got a haircut which made him feel much better. We spent both afternoons and evenings with the kids and had a great time getting to know little William. He's a very happy baby.

It was a little hard to get used to someone being in the condo again and every time Bill gets up, I wake up. But that's been the norm for the last 5 years so nothing new. We've also gotten into the routine of meds and timing and finger sticks. He complains a lot about it, but accepts it.

Today was his evaluation by physical therapy and she was extremely pleased with him. She thinks it will only take 2 weeks, 3 days a week, to get him ready for the cardiac rehab. All of the girls were glad to see him and we were surprised to see one of his nurses there. She said she rotates between the hospital and therapy. Debbie, the therapist, did re-enforce the walker rules and the driving rules. They did put driving down as one of his goals. One of the things she had him try was a finger exercise. He couldn't do it and she said that will get his OT consult. Dr. Yip had just requested the PT consult. The OT will continue with his hand rehab. Now we just have to see about the speech therapy for cognition.

The kids left after his appointment and we've been in and out. Bought a few groceries and then went to Walmart. I had a signal light out and I managed to change it myself! Of course Bill was supervising! We've watched the baseball game and will get supper started before much longer. We have found that we are both ready for bed by 9:30 now so it doesn't take long after supper and dishes before we're nodding off.

Bill's 3 meal choices for when he was discharged and could eat was breakfast at Waffle House, lunch at Rosina's (a local Italian bistro) and a steak from Applebees. He had the lunch Wednesday and tomorrow morning we're going to Waffle House for breakfast. I'm not sure when we're going to Applebees, whenever he says it's time. The owner of Rosina's was sooo glad to see Bill. He said that if he had known where to bring it he would have sent us food while he was so sick. We also saw some folks at Mayo today. The leader of the support group saw him for the first time since he was in ICU and she burst into tears when she saw him. We also saw some LVAD patients. I had met some of them while he was in the hospital and he had met one but doesn't remember them. But, that's OK, he'll get to know them again!

We are now out of the "cone of concern" with Isaac. We'll probably get some rain so we may not go many places next week except for therapy. But, I have lots of things I can knit and Bill has lots of puzzle books to work so we'll stay occupied.

All for today. Have a great week-end!

Good report again--no rejection! And the Prednisone has been cut again which puts us 1 step closer to going home!

Bill was released about 9:30 this morning and we went straight to the beach. Walked on the pier for about an hour. Saw a school of dolphin swimming very close to shore and the fishermen were having a pretty good morning. After that we had lunch as a favorit seafood restaurant with Mary-Rose, Jack and little William. It was just as hard saying good-bye to some of the employees as I thought it would be. I at least made some pretty good friends while he was there and they will be missed. They were also a pretty good support group for me.

When we got back to the condo, just as it started to rain, everyone stayed there while I bought some groceries. Mary-Rose showed me how to use the blood glucose we need to monitor Bill's blood sugar. We don't have to give shots yet, just monitor for now. But, if it's trending up I'm to call Stephanie.

Bill did have a little bad time this afternoon. He got some paperwork from the cardiac rehab group and was not happen to see it. There was a questionaire to fill out and he couldn't understand why it had to be done again since it had been done when he had the LVAD. It didn't matter what we told him he wasn't having any of it, even going so far as to say that he knew he would be going back to the nursing home after that. Part of it was because he was starting to dry out and after a couple of cups of coffee he was back to himself. At least Mary saw that I wasn't exaggerating about the mood swings.

We've had dinner and have the kitchen cleaned and the kids just left. I think we are all tired. I still have to clean his wound and re-bandage it and then we will probably call it a night. It may be a Xanax night...for both of us! But, all in all a good day!

We're going out the same way we came in...arguing about meds! Bill did not get his Prograf and Cellcept before dinner this evening. The med nurse was not someone I was familiar with, and after 10 weeks I know most of them. When I questioned her she said they were either given before she came on or they weren't supposed to be given. I made her pull his paper chart and the order was written for them to be held this morning for the biopsy, but nothing was written for them to be re-started! She was going to call the nursing home dr. but I told her he wasn't following him for those meds and to call the transplant cardiologist on call and gave her the number. She got Dr. Hosenpud and said that I was concerned about the drugs not being restarted and he told her to restart them per the previous order for biopsy.

The thing that is really disturbing is that the nurse who wrote the order is one of Bill's regular nurses and this is the 4th biopsy he has had since he's been there. He got his Prograf before I left and she was going to check the timing on the Cellcept because she said he got it at 9. I told her he was supposed to get it before he ate so she was going to check on it.

The biopsy went well today. He used his walker instead of a wheelchair which impressed them. Of course we won't have the results until tomorrow afternoon. Hopefully the Prednisone will get cut another 5 mg which puts us a step closer to home. Dr. Yip asked about going home and I told him that Tina and I had talked about that before and December would put him 2 months out with no Prednisone if the taper schedule continued as it has been. He thought about it and did some calculating and agreed that it is do-able.
We would have to come back in February and then probably not until May and then he may be on a yearly schedule.

Bill has finished all of his therapy and I have discharge notes for PT and speech. I'm to give them to rehab at Mayo to continue outpatient with them. It's going to be bittersweet leaving tomorrow. There are a few people I'm truly going to miss and it will be hard to say good-bye to them. There are also a couple of other residents that we will miss.

On a happier note, we met our youngest grandchild today and he is a sweetie. He talked and laughed and played on Grandpa's blanket he knotted in therapy. He also took a ride in Grandpa's wheelchair. We're hoping to go to the beach tomorrow after we get out so that Bill can walk on the pier again and then have some lunch. The pier depends on the weather, 70% chance of rain so I don't know that we will get there.

All for now, I'll let you know the biopsy results tomorrow.

Meds finally arrived at 3 this afternoon! Met with Stephanie and went over all of them to make sure I knew the dosages and times they were to be given. The pharmacy sent a really nice canvas attache case, water bottle, pill cutter, thermometer and travel pill case.

Bill did go on the outing today and did fine. He used his walker and only had 1 problem when he stood up from his seat to get out. He said his legs didn't want to work so he sat back down and tried again and they did fine. When they got back there was another little concert that he attended. He talked to the aides that went and to some of the other residents. He feels sorry for a lot of them because they are worse than he is and he says he can tell they're not going to get better!

I finally got to the center just in time for supper with him and when we finished Maggie brought his discharge paperwork for him to sign. Everything is still on track for Tuesday.

Today I got the equipment out of Kristin's garage. She had a rolator walker and the transfer bench for the shower. Also had some safety bars for the toilet. I didn't get the wheelchair because I don't think he is going to need it. It will just be making him use his walker here in the house to go from room to room.

The book I ordered for him came in today and he's already started reading it. It's a 13 week workbook to continue therapies on your own. He was really interested in it.

It's been such a long time since he's been home, I don't know how we will act! It's probably going to be really strange. I've been trying to type and eat jelly beans and I'm having to go back and re-type things. So--do I quit typing or quite eating jelly beans? I think you can figure that one out! Good-night!!

We had a very interesting day today. Bill's meds were supposed to come Fedex and I wasn't comfortable with leaving them at the door all day, so I told Bill I was not coming until the meds came and then I would stay later this evening.

Thought I would sleep in a little, but was up before 7 anyway. Bill called about 8:30 and he had eaten breakfast and was dressed and waiting for therapy to come for him. When they knocked on the door for him we said our goodbyes and I got busy. Cleaned all the floors and removed the throw rugs from the bathroom and kitchen. Vacuumed the carpet in the living room and bedroom and got the laundry completely caught up, including getting it all folded and put away instead of leaving it in the laundry room.

We talked a couple of times in the afternoon. He did all of his therapy and then went to the activity room for a concert! We had not participated in the activities because they all involve snacks and drinks and since he hadn't been able to eat or drink thought it would be better not to be tempted. I was surprised that he went and he said it was good and he talked to some people.

I stayed home until 4:45 and then stopped by Zaxby's for a salad and met Bill for supper. We went outside for awhile and I can home a little after 7:30 to see if the meds had come, but no such luck. I was supposed to meet with Stephanie tomorrow to go over the meds so I'll have to get back with her on that. It also means that I will have to stick around here again tomorrow.

It did feel good not to have to get up and out and I don't think I even got dressed until mid-afternoon. But, I was busy and wanted to wait until I was finished working. I think Bill also did well by himself and didn't panic when I didn't come. I will go tomorrow and then come home when he goes to therapy. He still hasn't decided if he is going to go on the outing. I told him it was his decision. Maybe getting through today on his own will help him make the decision. We're also supposed to sign some discharge paperwork tomorrow.

Except for not getting the meds the day wasn't wasted for me and it did us both some good. I just talked to him on the phone and we're both tired and ready for bed. He was going to go to the nurses station and tell them he was ready for bed and wanted his meds so they wouldn't wake him up! Sounds like some pretty good reasoning to me!

After getting called at 4:15 and 6:15 this morning from Bill who was ready to go and wondering where I was, the feeding tube was removed about noon. I came out easily and the dr. was pleased with the way everything looked.

The PAs and dr. were also pleased with his leg, but the PAs were more excited to see Bill walk and get onto the table by himself. The last time one of them had seen him was in the hospital and he wasn't convinced he would make it. The other one had to help him get on the table the last time he saw him.

Bill walked today and didn't use a wheelchair at all. He used one of the Rolator walkers, the kind with 4 wheels and a seat for resting. He only had to stop 1 time to rest. All of the buildings at Mayo are connected and we were in 2 of them, 2 stops in the first building, 2 stops in the second building and 1 stop back in the first building. We also made a run to the post office after his appointments but he stayed in the car. He was more tired walking from the parking lot to his room when we got back!

Because he had walked so much today he was excused from PT and OT, but he has to make it up Saturday. He did do his speech therapy and she was astounded with his work today. He had to look at a map of the US and then answer 13 questions relating to the map such as direction, bordering states, etc. She said he buzzed right through it and brought it to me to see.

The outing to Cracker Barrel has been moved to Friday, but he has decided not to go. I still haven't taken him off the list yet so maybe he'll think about it tomorrow and change his mind.

I left him tonight with Mrs. Erma, the 85-year old black lady who is across the hall. She's been joining us for meals at a table instead of eating in her room. They were plotting wheelchair races and how to go dancing when I left! I also reminded him that I won't be there in the morning. I also reminded him not to call at 4 am! Hopefully he'll start sleeping all night when he gets home. Otherwise it's going to make for a very crabby wife!

Here's the news we've all been waiting for....the gtube comes out tomorrow and he will be discharged next Tuesday from the skilled nursing center! Of course we still have to stay in Florida for a while for biopsies, but we are climbing out of the valley!

Had a really good day today, not including the news about discharge. Bill was in a very good mood although he was a little confused off and on. He was also confused last night and called me to tell me he lost a pair of shoes. It turned out that he thought he had more shoes there than he did so he thought a pair was missing.

I had several conversations today with therapists, our coordinator and the specialty pharmacy. We have to have his anti-rejection meds in hand before we can leave the facility. They will be delivered Thursday and I cannot open them until I meet with Stephanie on Friday to go over all of them with her.

So we are having a few busy days now. Tomorrow is an EKG, followed by the surgeon to check his leg and then the tube removal. Bill thinks that he will have to stay in the hospital, but the procedure only takes a couple of minutes. Then, Thursday I will stay at home until the drugs come, but it will be a productive day making sure that the condo is ready for him to come home. Friday will be the meeting with Stephanie and paperwork for discharge. Either Sunday or Monday Mary Rose, Jack and William will be here, Monday is biopsy day and last day of in-patient therapy and then home on Tuesday. I'm going to start bring things home now. There isn't much to pack up, but more than clothes now.

So, a new phase will begin now. We don't know what the next steps will be, as far as the transplant goes now. The therapists have recommended that he continue outpatient therapy so that has to be set up also. It's also a little scary that we will be on our own. I'm not concerned about the transplant aspect. That is mostly common sense and making sure his meds are taken on time (and I can do a better job than has been done at times as you know by now)! But, the day to day of stroke recovery is uncharted waters for us. So, I'm reading everything I can get my hands on and consulting online support groups. So, if any of you reading this have had any experience with living with a stroke patient, or caregiving for a stroke patient, all suggestions would be greatly appreciated.

I'm not taking my computer with me tomorrow so you won't get real-time updates on the procedure. Some of you may get text messages, but rest assured that I will update this tomorrow night as soon as I get home. Again, thanks for being with us on this journey...and continue to follow the new route we are taking! We can definitely use the support!

Bill had a good week-end and only had 1 little problem yesterday afternoon. But, I gave him a drink and within 15 minutes he was fine. He's wanting to go home so badly that he gets really frustrated when I remind him that when he leaves the center he still has to stay in Florida.

We were supposed to find out today what day he will be discharged, but hadn't heard anything by the time I left at 6. Maybe tomorrow. We also still don't know if the order to remove the feeding tube got signed. Again, maybe tomorrow.

The only glitch the entire week-end and into today has been meals. None of Bill's meals have been right, even though we filled out the menu sheets. When they checked yesterday, the kitchen said they had not received his menus so we filled them out again. Luckily I wrote everything on his calendar so we could remember what he ordered. I handed them to the CNA myself and she turned them in herself, but dinner was wrong and lunch again today. This time someone from the kitchen brought his meal and his menu. She said that if there was a line through his choice it meant it had been entered into the computer correctly, but when she looked at the computer printout that comes with each meal, they didn't match! She gave me her direct number and said she would monitor his trays to make sure they were right. I noticed that there were 3 other trays replaced this evening so there is a definite problem in the kitchen.

The activity office is having an outing to Cracker Barrel Thursday. Bill wants to go, but he doesn't want to go without me. I think it would be really good for him to go but won't push it if he's going to be upset about going. I haven't turned in his money yet so I'll let him think about it a little more.

That's about it for this update. Wish we knew what the next steps would be. Maybe tomorrow!

Had a good day yesterday after I got there. I managed to get quite a bit accomplished. Bill was in a great mood all day and even though I ended up leaving earlier than I had planned, he was OK with it. I've gotten an eye infection. It's like a sty, but not a sty. The dr. said that my lower lid is "very angry". DUH! It's very painful and itches and my face under the eye is really puffy. Anyway, I went to the urgent care clinic this morning and got an antibiotic for it. Got back in time for lunch with Bill.

He was not in a very good mood. His stomach was cramping again and we have traced it to dairy products and it doesn't have to be much. They have been putting his meds in pudding to make it easier to swallow and almost as soon as it is swallowed, he cramps. I was not happy that they sent him the wrong lunch. In great big letters at the top of his menu sheet are the words NO RAW VEGGIES. So why would you send a BLT for lunch. The nurse called the kitchen and they sent the entree we had picked and he finally ate. He was going to eat just crackers and his cookies but I told him no dessert until he ate his lunch! He was in a much better frame of mind after he ate.

We were talking to another resident and her son some today and she has been having problems getting the correct meals also. I wonder if part of it could be a lack of English speaking/reading employees. She also said that the night staff is very loud and rude. Bill had been telling me that for several days, but he is still confused enough that it's hard to decipher what is real and what is just in his mind. But Florence agreed that they bang the doors open and turn on all the lights and startle them and then leave the lights on when they leave.

We've found out that the order for the tube removal has not been signed, it's waiting for signature. So we still don't know when that will be. But, as far as I know, we will know something Monday as far as discharge goes.

Bill is still on the driving theme, but before I left tonight he said that if he needed to go anywhere and I couldn't take him he would just call Ron and tell him he needed to go to the store. We've had a couple of other friends say they will drive him around so maybe he will be ok with that.

All for tonight. My pain pills are wearing off and my eye is starting to hurt again. Been looking at this screen too much this evening. Oh, before I forget, Emily's boss's brother had his transplant Thursday evening. By 1 am yesterday he was awake and talking. I haven't heard anything since the initial report so I'm assuming that things are going well. It's kind of bittersweet that his went so well at the center that told Bill he was too old and Bill's went so wrong at one of the premier centers in the world. But, we're glad for Larry and his family and thankful that Bill is still with us and in as good a shape as can be right now.

I thought yesterday was going to be another bad day when Bill called at 4:15 am, again complaining about not having his wallet and credit cards. The nurse told me when I got there that he had been up and dressed since 5 and then got mad when it was time for meds. The night nurse also told him, in my presence, that she trusts me and he should too.

We managed to get to Mayo and get the bloodwork done without killing each other and after breakfast he calmed down some. As soon as he got back they whisked him away to therapy so he didn't have any time to brood about things again.

He was fine in the afternoon except for a few times we he started to bring it up again. I told him they day we walk out of there for good I will hand him his wallet, with everything in it. That seemed to make him feel better At least this time I wasn't plotting to sell everything!

The paperwork has been signed for the gtube removal and Stephanie is trying to get it on the radiology schedule. She would like to have it done on a day we are already at Mayo but we don't have another appointment until the 15th and then again on the 20th, so maybe she will just take the first available day. And, speaking of the 20th, that may be discharge day, or right around there. I have heard them say the 20th, but we don't want to say anything to Bill in case it gets pushed back a day or two.

A new concern to deal with now is driving. He is determined that he is going to drive HIS car when we get home. It's a good thing that we've always had an informal use of cars. If we're in his, he drives and in mine, I drive. And, thankfully, we are in my car here! I talked to his therapists about it yesterday and they have talked to him about it. We've comprised, Bill and I, and will let Dr. Yip make the final decision. I asked him how he would feel if he was driving with McKenna in the car and he had an accident and that seemed to help, although he says we'll just have to sell the car. I told him he'll just sit on the other side!

I've taken the morning off to get my oil changed and relax a little. This has been a very stressful week again. I told him that I wasn't coming this morning but I would stay later in the evening and have supper with him tonight. I also told our housekeeper and asked her to tell Lisa this morning. She said she would also remind Bill if he forgot. He seemed OK with the idea. And, shortly after the time I usually get up, 2 delayed text messages came through, so I didn't get to sleep in any. But, I feel rested and have laundry in both the washer and dryer and picked up the place some. It feels good not to have to get up and out and it will feel really good when Bill gets home and that becomes a more normal thing. Of course we will probably be bored pretty quickly!

I found a book on line, written by an attorney who had a stroke at a very young age. After he completed his rehab and was told he wouldn't progress any farther, he decided to prove them wrong. He's now a practicing attorney and wrote this workbook to help others recover on their own. I'm going to stop by Barnes and Noble while I'm out to see if they have it. Bill said he thought he would like that since he had said he needed to write things down to help him remember things. There were also a couple of books to help me deal with him. Caregiving for the LVAD/transplant is a piece of cake compare to stroke caregiving!

And in the blue corner, weighing in at 146.8 pounds...he made his goal weight and the paperwork has been started to have the feeding tube removed! It has to be done at Mayo so as soon as the nursing home dr. gets the order written and faxed to Stephanie she can get it scheduled. It will only take about 10 minutes but Bill has gotten it in his mind that they will be removing scar tissue in his chest and have to spend several days in the hospital. Where he got that idea is anyone's guess!

We also talked to Maggie, one of the social workers today and told her the news and Bill said that we are just waiting to see when he can leave. She's the discharge planner and she said she will have a date for us by Monday! As far as PT and OT go, they are ready to sign off. We're hoping that since he will have to go through cardiac rehab, Medicare will pay for that and speech therapy on an outpatient basis. So, Monday we will have at least a tentative date.

He has also been released from the lung doc and will only be seen on an as needed basis. His lungs are now perfectly clear. Amy, the PA couldn't believe that he had smoked for 40 years and quit just 13 years ago! He still has his Advair and a rescue inhaler but I don't really anticipate him having to use it much if at all.

We have to go to Mayo tomorrow for a blood test. The lab the center uses has messed up his Prograf level test that was requested last Monday (a week ago). The first time they ran the wrong test. This time they used the wrong colored top tube. They were going to re-draw it this afternoon, but it has to be done before he takes the Prograf so I told them I would just take him to Mayo in the morning. Hopefully they will remember to hold the Prograf and give it to me to give to him after the test. I'm also going to take him to breakfast at the wonderful cafeteria at Mayo. He has to take the Prograf on an empty stomach so I told him not to eat his breakfast. Maybe he'll remember.

He got upset again this evening about the alarm on his wheelchair. When he started yelling at me about it again I told him I loved him and would see him in the morning and left. He doesn't like it when I do that but it gets through to him better. He called me about an hour later and, while he wasn't completely over it, he was better about it. At least he wasn't raving again. Other than that he had a really good day.

I feel like I'm getting a sty and need to really look at it since I'm prone to the ones that grown inside the bottom lid. But this feels more like an infected eyelash or something. Just haven't taken the time to look in the mirror!

All for tonight, have to get up earlier to get to Mayo early.

Bill was totally out of control today, all because he did he didn't want to take a shower, going so far as to swat at his nurse and tell her to get her hands off of him. He was also swearing at both the nurse and his CNA. I told him he was stinky since he hadn't had a shower since Thursday. He only gets a shower 3 times a week and he refused to shower Saturday. This time I got in his face and told him that his behavior was unacceptable and he was acting like the other resident who was so nasty to the staff and other residents and family members. He grudgingly apologized and did shower but he refused all therapy. And of course I am the bad guy again, keeping him there with no money or ID so that he's a prisoner.

This time I decided not to let the behavior go and let him see how his behavior affected other people. Of course the staff can't be stern with him so I was and after a while he agreed to go to therapy. During that time I did some checking and he had not had anything to drink except for 2 cups of coffee since last night, so he was under-hydrated again. But, he wouldn't hear that he needed to drink. The CNA also suggested that he be checked for another UTI. The nurses and therapists think it's because he feels so much better and wants to be more independent. We all understand that, it's getting him to understand that his safety is the main concern.

One of the sticking points has been that I leave in the evenings, even going so far as to accuse me of meeting my boyfriend. I told him today that if it would make him feel better, I would not come in the mornings when he is so busy with therapy and then I would spend the afternoon and evening with him. That didn't satisfy him either so I asked him if he just wanted me to stay away and not come at all. That led to more accusations, I was selling the house and keeping all the money and not telling him.

We talked to the dietician this afternoon and she said that if he can get his weight to 145 she would ok taking out the feeding tube. They will weigh him tomorrow. He was last weighed Saturday and I think he was at 142.8. Of course, with all the problems over the week-end it was understandable that it would be down. After talking to Karen, he really perked up and ate all of his dinner, 2 packages of peanut butter crackers, 2 small bags of Cheez-it crackers and a cherry turnover. He also drank a coke, glass of tea and 2 bottles of water! I talked to Stephanie to see who to talk to about having it removed and she said she thought it could be done bedside and we wouldn't need to make a trip to Mayo for it. But, she wasn't sure so she'll let me know tomorrow. I had decided to not go tomorrow morning since I do have some errands to take care of but since they are going to weigh him early, I will go and then maybe leave to get my stuff done.

He tried to guilt me into staying this evening, but it didn't work. He called about an hour ago and the change in him was amazing. He also admitted that he had "screwed up" today! It was actually nice to be able to talk about it rationally for once. But, who knows how long, if at all it will be remembered. I guess we shall see in the morning.

Even though I'm emotionallly drained. I don't feel as desolate as over the week-end. Maybe it was not holding back in front of him that made the difference, or it could be the Xanax I took throughout the day! Of course that goes completely against my nature, and I think I channeled my grandfather, so family, you know who I'm talking about! I wasn't quite that bad, but I didn't just sit and take it today.

So, it's late, I'm tired and I'll let you know what his weight was.

Back to more normal today. Went to Mayo to have some bloodwork done. Dr. Yip wanted to check for CMV which is similar to herpes or chicken pox. It's one of those viruses that can lie dormant, but Bill did not have the antibodies for it before the transplant. As far as they know the donor heart also was not a carrier but it can develop at any time, especially in heart transplants. All of the bloodwork was fine so they don't have any idea what has caused the diahrea. He didn't have any of it today and when he finally had a bowel movement it was completely solid for the first time. Maybe it was a combination of food and Ensure and meds and learning how to digest all of it again. We may never know!

Bill felt much better today and ate well for all 3 meals. The kitchen messed up again and sent him a salad instead of the other entree. But, I think this was 1 of the days that he didn't really like anything offered, or there were too many raw veggies so I was going to bring him lunch. But when Lisa checked with the kitchen they said he was getting a tray. He finally got roast pork with mushroom gravy and fries. He also ate some potato soup and fruit cocktail. Dinner was roast rosemary chicken and rice pilaf and he ate most of it.

Again, with more fluids on board, he was on an even keel so yesterday must have been due to not even fluid again. So the fluids were pushed and he drank without too much complaining.

His next biopsy is August 20 and I talked to Stephanie about the logistics about his discharge.We have to have enough lead time to get his meds from the specialty pharmacy and go over them with Stephanie so that I know what they look like and when they should be given. I already know most of it since I've had to stay on top of it now. But, it won't hurt to have a refresher course. That's generally done before discharge from the hospital, but since we were more concerned with the stroke aspect, we didn't do too much teaching.

We had a very nice surprise this afternoon. A former co-worker of Bill's and a client of mine is in Jacksonville visiting his daughter and meeting his new granddaughter and he came by to visit with us for a little while. It was great to see him. He'll be back in November for Thanksgiving and he said if there is anything he can bring us at that time or if there is anything he can do at home just to let him know. He's a great guy and it was really nice to see him. We also had a visit from Faith and Abner. We hadn't seen them for a couple of weeks and they were surprised to see how good Bill looked. They weren't able to stay long because Abner had an appointment at Mayo but it was also good to see them.

All for tonight. Laundry for Bill is done and my eyes are getting heavy, so I'm off to bed.

The evil Bill showed up with a vengeance today, along with continued diahrea. Finally got them to call the transplant team after showing them that this was a warning sign and some kaopectate was ordered. But, I am again the bad guy spending all the money and keeping him there against his will. He also spit his medicine out and threw it across the room and then tossed the tv remote after it. I know this is not normal behavior for him, but it doesn't make it easier. It wouldn't surprise me to get a call tonight telling me that he tried to leave. When I told him I was coming home he acted like he was being put in prison and abandoned. He also called 5 times before I could even get home.

I called him back and things seemed fine for a while and then it started over again. So, I told him I wasn't talking about it anymore and he hung up.

The rational part of me understands, but the emotional part is heartbroken. I just don't know what to do anymore. If  I try to be understanding and "nice" it makes it worse, but if I show any emotion he turns into a pouting little boy. It's the same reactions he had with the depression. I've even told them about this but no-one from Mayo on down wants to believe me.

Anyway, for those of you who called this afternoon and evening and didn't get me, answering the phone made things worse and now I just don't feel like talking to anyone. George and Shirley and Don and Shirley, thanks for the birthday wishes. I'll connect with everyone in a few days.

We've had a couple of down days now. Bill's had a little tummy problem since Thursday. They called the dr. to see if there was anything he could take and they wanted 2 stool samples today and tomorrow before they would give him anything. We understand the concept, they want to see if there is any bacteria because if there is they want it to get completely out of his system. But that doesn't help him feel better. This morning he went to the bathroom 6 times in 3 hours, along with stomach cramps. He finally kept some crackers and coke in after lunch, but started having cramps again after getting his afternoon Ensure. I'm thinking it's more his meds since diahrea and cramps are side effects of nearly all of them. And, combined with his stomach learning how to digest food again, he's been pretty miserable.

The evil Bill tried to show up this afternoon and I realized what may be causing this because it hasn't happened for a couple of weeks now. He has not been drinking the last couple of days so he was dry. Not dehydrated, but his veins were dry which means his blood volume was not what it should be. His speech was a little slurred and he didn't look like he was "there". After I made him drink, and he kept drinking after the first sips, his eyes cleared and his speech cleared and he was more alert. This made me look back to the other times. While he was still being fed through his gtube, he got 300 ml of water flushed through every 4 hours during the night. During the day when he was not connected, he was to get 250 ml every 4 hours flushed through manually. This always bothered him to get so much fluid at one time so it wasn't always done. And, since most of these episodes were on week-ends, and the week-end staff isn't as diligent as during the week, except for 1 nurse, it's made me wonder if that wasn't the problem all along. It may not be, but who knows. So, we're really making him drink. I talked to him tonight and he said he's been drinking all evening.

Aimee, Lee and Dani left this afternoon. There are wildfires within 5 miles of their home in Oklahoma. They told Heather and John to get the animals in the truck along with anything else they could grab and get out if they were told to evacuate. We haven't heard anything from any of them since they left so hoping all are OK.

I took some time off yesterday afternoon to see what could be done with the bedroom and with just a little minor re-arranging, I think he will be able to manage his walker from his side of the bed to the bathroom. I also got the laundry caught up and did some picking up. You would think that with only 1 person here, mainly to sleep, there wouldn't be too much to do, but that wasn't the case. It actually felt good to do normal stuff!

When I got home there was a package at the door. Since my birthday is tomorrow I thought it was from my mother, but it was not. It was from the church, filled with all of my favorite things! M&Ms, jelly beans, goldfish crackers, yarn, oreos, peanut butter crackers and a gift card to Applebees! My daughter was in on this, letting them know what I liked. All I could do was sit in the middle of the floor and cry. This has always been such a loving church and I was overwhelmed! To those of you from Beacon who read this, THANK YOU! I love all of you!

My mother has also been busy. I started getting lots of birthday cards this week. It didn't surprise me too much to get them from members of her church, but then I started getting them from family members I don't hear from, and other people from "home", mostly parents of classmates and other friends of my mom's. She put out the word for a card shower and they came through. I have appreciated all of them, especially the notes that were included. Bill and I may have to make several trips to visit people so they can see how he has recovered from everything. I LOVE YOU MOM!

And, Janina, your mom sent the nicest note and card! When you talk to her tell her I really appreciate the card and the prayers.

That's what has been the most heartwarming, to hear from so many who have been praying for a man they have never met and a classmate of their child from, well, many years ago! I haven't lived where I grew up since 1973, so to be remembered now is really special. So, if any of you who sent cards read this, thanks so much. And if you know someone who sent a card but doesn't keep up with this, please pass the thanks on to them.

All for tonight. My 57th year is rapidly winding down! And what a year it's been! This time last year we were making plans for a quick trip to Illinois for Mom's birthday and then on to Mayo for the LVAD implant last September. It doesn't seem like it's been a year and at the same time it's been a lifetime. This isn't the "valley work" I would have chosen which is why we don't get to always choose our path. I have found this year just what I can handle, and I know I couldn't have done it alone. I may not understand why, but I've learned not to question. OK, enough of the philosophical stuff, Goodnight!

Good Morning! Had a great day yesterday and a couple of talks with the therapists. Linda, the OT, had talked to Michele, the PT, and they think that Bill is ready to go home. He can use lots more therapy, but he is steady enough that he is going to start doing things on his own no matter how much they tell him not to. We talked about removing the mats and raising his bed and putting his wheelchair next to the bed. He transfers to the chair/toilet/chair/bed very well and that could remove the fall danger. When he has fallen it's because he tries to just walk to the bathroom and trips over the mat. She thought that might be 1 solution. I talked to Tammie the unit manager about that and she also thought that it could be done. But, a final decision hasn't been made so I don't know what they did after I left last night.

JoEllen said that he had an "Aha!" moment one day last week when his brain seemed to turn on as far as cognition goes. They've been giving him stories to work with, having to fill in blanks. He also re-took a test in OT for perception and whipped through it. The baseline test took him 2 days and he did poorly on it but she said he did great this time and only missed a couple. From the last eval JoEllen had done before her vacation, they had a discharge date for around the end of August. Now, they're talking more 2-3 weeks.

Bill showered himself yesterday. Lisa was in with him, but he did it all himself. He's also been shaving himself with his regular safety razor and hasn't cut himself. The tremors have eased a lot now so he's much steadier. He also learned a new "trick". Lisa heard the alarm sound on his wheelchair and then it stopped so she came to see what was going on. He was in the bathroom, on the toilet, with his had pushing down on the seat of the chair to put pressure on the alarm sensor! We're all surprised he didn't just disconnect it because he has watched me and the therapists turn it off and disconnect it every day.

I will have lots to do to get the condo ready. The side of the bed Bill sleeps on is the farthest from the bathroom and it's a tight squeeze for his walker so I need to see if the bedroom can be rearranged. It's an odd shape so I don't know it it can just be put on the opposite wall. There is also the TV cable to contend with. At least all the furniture is on sliders to make it easier to move! I also have to contact Mayo about his transplant meds. cardiac rehab, outpatient rehab, get some equipment ordered that he will need at home...my list keeps getting longer and longer. He also still has the feeding tube, nothing new on getting it removed, and the wound care, not to mention learning how to test blood sugar and give injections.

There has apparently been an abuse complaint made against the center. The state inspectors were there again yesterday and they were wanting to talk to patients and family members. We were asked if we would talk to them and agreed. The RN watched the dressing change for the wound and then asked some general questions about care. We were very honest with her. Since I've been there every day and since we don't just stay in his room, I've observed all the staff with patients and if there is any abuse, at least on Bill's unit, it's happening on the overnight shift. Bill has complained some about the night shift so that could be, but as far as day/afternoon shifts go, everyone is very good with the patients.

So, we had a very busy day yesterday. It remains to be seen what will happen today!

So far so good as far as food goes. Bill is eating everything he is brought and drinking his Ensure between meals. Lisa has even ordered more at breakfast for him. Since we didn't know how he would do when we filled out the menus, we ordered lightly. But he's been hungrier so Lisa has gotten him more to eat.

We did go out with Aimee, Lee and Dani to a favorite seafood restaurant and Bill ate a gigantic salmon steak. It was probably 8 oz. He ate all of it and a few fries and enjoyed it all. We were all pretty tired by the time we called it a night. They all went to Orlando today to Sea World and should be back some time tomorrow.

The Director of Nursing, Rosemary, told us yesterday that he's getting really close to discharge. The main hold-up is with Speech Therapy. His speech is pretty good but they also work with cognition and word retrieval and since they had to concentrate so much on swallowing, they are just now really working on the other aspects. But, he's doing quite well with it. They are encouraging him to start a journal to help with memory. His long term memory seems fine, it's the short term that has suffered. He also has a problem with word recall, but can usually retrieve the word with 1 or 2 hints.

He maintained his weight from Monday to today, no change either way. I don't know how long they are going to give him before making the decision about removing the tube. Hopefully they will make the decision soon. I wasn't there today when the dressing was changed on his leg, but it looked fantastic when it was changed yesterday. They are still trying to get a closer appointment to have the surgeon check it but have not heard anything yet.

Bill has gotten it in his head that when we leave the center, we will be going home, not to the condo, but home. I've told him several times that it will be up to Dr. Yip as to when we can go home, and I think I've explained it here, but if not, here goes again. And if it's a repeat, skip over it. He has to be totall off of the Prednisone for 2 months before he can go home. He's on 10 mg now and, if Dr. Yip stays true to form, it should drop to 5 mg at this month's biopsy and then be taken off in September. That would put the 2 month period Oct and Nov, with a target date of going home December. We would, maybe, have to come back in either Feb or March for another biopsy and definitely in May for the 1 year checkup. So, Christmas is "do-able". Bill has just decided we are going home now and it's going to be quite a let down when it's just to the condo.

I also think that Bill doesn't remember being at the condo at all. When we took our drive Sunday, he didn't recognize the area and it was the route to the condo. Yet he recognized the restaurant last night. Maybe when we actually come to the condo it will jar his memory.

All for tonight. I told Bill before I left not to do anything foolish tonight so that I will get called. I haven't slept well the last 2 nights and plan on taking a sleeping pill tonight so I don't want to have to go out in the middle of the night! He's been pretty good lately and I think he was pretty tired tonight too. He thought he would go to bed about 9 and maybe they will remember to put his urinal beside the bed. That's the main reason he gets up! Hope everyone has a good night!