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!