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!