We've had another good couple of days. Since they can't get Bill's tube unclogged he's really making an effort to eat everything. He's doing a pretty good job and he's also able to swallow his meds. He has a little trouble with the larger pills but he keeps working at it until he gets them down.

Yesterday we took a drive to Amelia Island along the scenic route that was recommended by the housekeeper he has. We drove along the St. Johns river and inlets and the ocean, and over several bridges. It was a lovely day but so hot that the air conditioner in the car couldn't keep up and cool us down as much as we wanted to be. On the way home we stopped and had frozen custard. This place had been raved about but I was really disappointed. For my Illinois friends and family, Custard Cup and Mike's Chill both have better custard. This place only had chocolate, vanilla and chocolate/vanilla twist. They also had Italian Ices in various flavors and I guess you are supposed to get a "Blendini" which mixes the 2 together. Why not just flavor the custard? It was also pretty pricey, but Bill enjoyed it and needed the calories so it was money well spent.

We talked to the dietician again today and they are trying to get an appointment scheduled to get Bill's gtube removed. Dr. Blatt wanted to have him go in and have it unclogged, but Karen talked him out of it. She said he is too close to having it removed completely that she didn't want to put him through that. So, as long as he can maintain his weight, they won't clean or replace it. He has lost 2 pounds, but the last time he was weighed was Wednesday, so 2 pounds over a 5 day period isn't bad. He had lost 4 over the week before when he was still on total tube feeds. She wasn't too concerned about it. She's going to supplement his meals with Ensure and not bring it with his trays but between meals. They've been bringing Glucerna with his meals and he gets too full from the meal so he doesn't drink it. They have started putting them in the fridge and they are going to give him 1 tonight before he goes to bed.

His wound still looks good with just the dressing on it. It was a little gunky so it's still draining a little, but cleaned up nicely. It's so much better to just have the gauze dressing on it instead of the sponges and tubes.

Aimee, Lee and Dani are here this week and we are going to take Bill out to eat tomorrow night. That's so important to him and caused lots of problems when John was here. We were going to go tonight but it was raining and since he has such a hard time walking we (I) decided that it wouldn't be a good idea. So, hopefully the weather will be better tomorrow.

So, you're all caught up with the news from this end. I'll keep you posted!

Pretty good day yesterday except that his feeding tube is clogged again and this time can't get it open. Hopefully he's eating enough that they won't have to replace it for just a few days. They've added Glucerna to each meal to help control his blood sugar spikes and to supplement the nourishment.

We didn't do much yesterday. We were going to go out for ice cream in the afternoon but we were both too full after lunch and it was too hot. Thought we were going to get some rain but all we got was thunder.

Aimee, Lee and Dani are on their way. They left yesterday afternoon and stopped about 10 last night. I know that Lee and Aimee are both early risers so they will probably get on the road early. Our friends Cindi and John are also coming back today for appointments at Mayo tomorrow. It will be good to see them too.

The man in Memphis I told you about did not get his heart. It turned out to be unusable after all. The message I got was that it was enlarged. I don't know if it was already enlarged prior to whatever caused the death of the donor, or if that trauma caused it. In any case, he is still waiting.

We're going to the little church service this morning and this time we can join in the coffee social! That's been the hardest thing for him. They have a lot of activities but most of them include snacks and since he couldn't have those he didn't go. There's also a movie this afternoon. Don't know if we'll go to that or watch the Olympics. Just have to see how the day goes.

Another great day, although Bill had a rough night and was a little distraught this morning when I arrived. He couldn't get any help in the night and soiled himself, which always upsets him. He's complained before about the overnight CNAs and Lisa, our usual daytime CNA has told us that when she comes in the call buttons are on the floor where the patients can't find them. But, I think just me being there helped him and he settled down to try some breakfast. He also wasn't dressed so I dressed him after he finished eating. His CNA today is one of the lazier ones, didn't check on him at all except to see if he was finished with breakfast and sat in the TV room most of the morning. And to top it off, his pajama pants disappeared! His laundry bag was hanging on the closet door in plain sight so why they weren't put in a plastic bag and put in there is a mystery. I have a sneaky feeling they were just thrown away with his brief when he was changed. We're checking to see it they went to the laundry but I think they were tossed. It happened once before and we found them, but again, that time we had a good CNA.

OK, enough of that. We met with the nutritionist this morning to devise a plan to discontinue the tube feeding. It was decided that he would be connected at 10 pm and it would run until 6 am. Also, if he eats at least 50% of his meal at each meal through the week-end, the tube feedings would be discontinued Monday. If he can then maintain enough calories, the tube will be removed shortly after that. We filled out his menu requests for next week, which included lunch and dinner today. When they brought his lunch it was a chef salad. It looked lovely, but, with the transplant, he cannot eat any raw vegetables not prepared at home because we can't be sure how clean they are. This was in big bold letters on top of his order! But, they brought him another lunch which was supposed to be beef goulash and all it was was the beef! But he ate most of it and some sherbet and fruit cocktail. His dinner tonight was his favorite...roast turkey. He said it was pretty dry and he had some trouble with it because he was not cutting it into small enough pieces.

He was able to swallow his meds tonight except for his Prograf. That one has to be taken on an empty stomach and he gets it at 6. They bring the dinner trays at 5:15. We're checking to see if they can move the time of the meds to 5 which I think will be fine because it's in the 2 hour window they allow for meds to be given.

The wound vac also came off today! It now just has a gauze dressing on it with a clear seal to keep it clean. This will be cleaned and changed every day until it is completely closed. Dr. Landolfo said he wanted to see him in a week and when they made the appointment it was for the 15th, so the nurses are going to call to see if it can be rescheduled. The wound looks fantastic considering what it looked like in the beginning.

We don't know how he managed to get in, and Bill said he just pushed on the door, but he visited the "Memory Unit" today! We had been outside and when we came in I told him to go to his room or the TV room while I stopped at the bathroom. He wasn't at either place when I checked and as I was heading to the nurses station to see if he was visiting them, I saw his hat wheeling down the hall! I got one of the CNAs and he was turning the corner when he got to the door so he went to the other side and there he was! When the door opened, the nurses on the other side tried to stop him thinking he was one of theirs making a break for it! Those doors are only supposed to open when a button on the wall is pushed, but Bill said he just opened the door and went through! It's a good thing I told them he was loose when I left tonight!

Leaving him up was something new for both of us tonight. Usually I make sure he's in bed since he's hooked to his food, but since they aren't doing it until 10 he stayed up. I warned him not to go to the bathroom by himself or to try to get into bed alone but who knows if he'll remember. I told him to go tell the nurses when he was ready to go to bed and they would help him. I also told them when I left. So far no phone calls and it's time for his last meds so maybe they're putting him in bed for the night. I don't know who his night nurse is. I saw a familiar good nurse walking across the parking lot when I was leaving so I hope she'll be on his floor instead of one of the temp ones. It is, after all, the week-end!

I have a prayer request for all of you. My daughter's boss's brother will be undergoing a heart transplant at 4am in Memphis. He is about the same age as Bill and has been living in the transplant unit at the hospital as his health had gotten to the point that he needed continuous IVs. This is the 3rd try for him. So, include Larry in your prayers along with his family as they stand watch. I know from experience what they will be going through!

All for tonight. Have a great week-end! And Happy Birthday to my granddaughters McKenna and Kiyann who are 8 and 5 today!

Here it is folks, what you've all been waiting for...Bill has been given the go-ahead to eat anything he wants, and to drink anything he wants. No thick drinks, no pureed foods, he's been give no restrictions! They told me that was almost unheard of. The pathologist he saw today is a good friend of his therapist and they were on the phone immediately after we got the results. There was a hamburger waiting for him when we got back and he got hugs from all the therapists. His physical therapist is on vacation and his other therapist was going to text her! Everyone, including us, were ecstatic!

He's still going to get some tube feedings until they see that he is taking in enough calories. When he is, they will discontinue them and remove the feeding tube. We're supposed to meet with the nutritionist tomorrow to set up a plan.

Tomorrow is the appointment with the surgeon. Hopefully the wound vac can be removed, if not tomorrow maybe by next week.

So, today has been a red-letter day. Thanks for all the prayers and for crossing everything that was crossed. Keep it up a little longer for a good report tomorrow. All for tonight, I have to make brownies!

French toast with blueberries, veggie omelet, sausage links and apple juice...it's what Bill had for breakfast! And it was not pureed! He ate about half of it and had no problems chewing or swallowing. The juice was not quite nectar thick so it was the thinnest liquid he has had. This of course was the final prep for his modified barium swallow study tomorrow morning. We'll go back tomorrow afternoon to get the results. We wish it was back to back, but it's not. It will also throw off all of his therapy. They will try to fit it in between the study and the time we have to go back for the consult.

His wound is so small now it's hard to believe it was as big as it was. The measurements today were 3.7 cm in length (compared to 7 cm to start with) 1.6 cm in width (compared to 3 cm) and 0.3 cm deep (compared to 3 cm deep). The nurses seem to think that Dr. Landolfo will recommend that the wound vac be discontinued and just cover it with a sterile dressing to let it close on it's own now. There is no drainage to speak of and the lump that was beside it has disappeared. They think that it was a pocket of fluid that has been drained and the rest of the fluid will be re-absorbed by his body.

He has done so well now with standing unaided. Of course someone is always with him when he stands but he's very steady on his feet now. He did get a little wobbly when he was getting into bed tonight, but he was concerned with the tubing on the vac and his feeding tubing since he had been connected for the night. But, stubborn man that he is, he didn't want to get into bed before they connected him.

No other news that I can think of. Keep everything crossed that can be crossed, and don't forget the prayers that this study tomorrow is successful. It will mean that he can start a regular/semi-regular diet and the gtube can be removed. I'll let you know the results tomorrow night.

It's been interesting the past 2 days! Bill's biopsy went well and the results today were no rejection again. His prednisone is going to be lowered again which could also help with the mood swings. He only had a short time yesterday when the evil one started to come out. But it still seems to work when I tell him I'm not talking about that anymore. And this time the change was almost immediate. Makes me wonder if he knows what he's doing.

His swallow study has been scheduled for Thursday morning and we will get the results that afternoon. He also has an appointment with the surgeon on his wound. Maybe both the wound vac and the feeding tube will be gone soon.

JoEllen has been pleased with his progress while she was gone. He ate a banana yesterday, without it being mushed and today he ate most of a bowl of oatmeal with milk and did quite well with both of them. She would like to have him put back on the Aricept and Namenda to see if it helps his cognition. I've got a call in to Dr. Yip to see if it will affect the heart any.

He walked quite a bit the last 2 days and has gotten quite steady without any support. He still gets tired easily and I think that's more a result of having to concentrate so hard to get his legs to move how and when he wants them to.

There has been another patient who has been quite abusive to the staff on the unit. He spits at the nurses and deliberately pours his drinks on the carpet and yells at the CNAs. Yesterday he was loose on the unit and stopped me and asked if I knew where the store was. (There is a store there but I haven't found it yet). I told him I did not know and he told me to turn around and go back the way I had just come and I would find it. I told him all I had seen down there was the piano. A staff member walked by and he told me just to follow her and I would find it. I told him I didn't want to go back that way and he then asked if I was as stupid as the woman who just walked past us! I told him I guessed I was but I wanted to go the other way. Since I knew how badly he treated everyone I really wanted to ask him if he was always that rude to people, but Mom, you raised me too well! I just couldn't do it!

I got my new glasses today finally and, even though it took awhile, I can see quite well with my regular glasses. However, I can't see worth beans with the sunglasses. And only the top half of the lens is tinted. I can see fine through the bifocal part which is not tinted, but the clearest part for distance is in the progressive section which is where the tint stops. Guess I'll try them for a few more days and if they don't work I'll take them back to see what can be done. They also aren't very dark and since my travel is east in the morning and west in the evening, I'm always looking into the sun. Good thing I still have my "old people" glasses that fit over my regular ones. May have to keep wearing those!

 Oh yeah, he finally got a new IV pole. The one he had was very unstable and was finally leaning so badly that if it was touched it started to topple. Bill hit it yesterday with the wheelchair during speech therapy and JoEllen made a great athletic move to catch it before it hit him on the head, while forgetting where she was and said a couple of choice words! I finally caught Tammie before she left and showed it to her and within 10 minutes we had a new one. This after 3 days of asking for 1!

So, that's what's been going on in our world the past couple of days. We've now gone over 10,000 hits on this page which is unbelieveable to me. I never thought it would go this far when I started it 3 years ago.

Bill was up and dressed and ready for church by the time I got there this morning. He even had on trousers and a button down shirt instead of shorts. Lisa found a pair that the wound vac would fit through, although taking them off this evening was a chore. We had a lovely little service at the church and Bill made it through all of the hymns except How Great Thou Art. But, I saw several wiping eyes during that one.

Instead of using his wheelchair to go to the service he just used his walker and by the time we got back to his unit he was pretty tired. So, he got in his chair and we went to the TV area instead of watching TV in his room. I know he gets tired of being in there.

He asked me if I was getting hungry and I said I was thinking about running out to get something and he got very upset that WE were not going to get some lunch. And, just like that, the evil Bill showed up. He was not happy at all when I left and when I got back in less than an hour he had really worked himself into a tizzy! I am keeping him locked up there until all the money is gone and he needs to have his credit cards there in case there is something he wants to buy. He again took himself outside and Lisa went out to talk to him for a long time. She also made sure that I was OK since a lot of family members do get upset with behavior like that. And, while it does upset me, I was fine today. He finally came in and after a little while he was back to the good Bill. It seemed to work best when I told him I was not talking about certain things and then just ignored his rants so maybe that's the tactic to use, at least until that doesn't work anymore.

We ended up having a better late afternoon and he was fine when I left. We have a very early day tomorrow and I have a feeling that they are going to forget to disconnect his food at midnight and they will give him his anti-rejection meds in the morning. I reminded his nurse tonight before I left that the food was to be disconnected and that I was to take the meds with me in the morning, but, since she put the Prograf in with the other meds instead of under the tongue, I don't know if she'll remember. I think I know why they have such a hard time with that med. Even though the instructions say sublingual it's a capsule and they can't figure how to do it sublingually. However, the entire list of instructions for it say to tap the medicine into one end of the capsule and then take it apart. If they would read the entire directions they would know how to do it. And, after 6 weeks, they should know, except all of the week-end nurses are part time and only come in on week-ends. This one even said this was the first time she had worked on the rehab unit! The only saving thing about the mix-up tonight was that his food had not been disconnected so it was given on an empty stomach as it's supposed to be.

Bill has it in is mind that the biopsy is a step to getting his gtube removed, even though I have explained it to him step by step. Maybe by morning he'll understand it.

All for tonight. Since I have to be there so early in the morning I need to get to bed as soon as the laundry is done. I'll let you know how things go and what the results are. Of course we won't have them until Tuesday afternoon, but I'll let you know how the procedure goes tomorrow.