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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

More when he's back in the room.

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

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

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

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

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

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

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

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

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