Really tired tonight. It was an emotionally draining day. It broke my heart to see Bill crying today, but we worked through things. I think he's going to go through a lot more of that. But, he's still talking up a storm and surprised his speech pathologist since she had never really heard his voice!

The Foley has been placed again and we're all hoping that the nerves will start working again at some point and it can be removed.

The nurses have named him favorite patient and they are all pulling for him. Even other patients families come to the door to watch him walk and encourage him. When our nurse from today got relieved she came in to tell us good-bye because she is off tomorrow. It's going to be a hard day for me tomorrow, telling the staff good-bye. All of them are so wonderful and have taken such good care of him for so long, it's like losing a member of the family. I told them that he's going to come back and dance down the halls with all of them!

Hopefully we will get moved tomorrow with no problems. I haven't heard anything from the case manager since early this morning. I know that his specialty meds have been ordered and will be sent to me because the Healthcare Center may not be able to get them.

I'm really tired now so heading off to bed. I'll let you know how tomorrow goes.

Big day again so far today! Trach is OUT! He's also walked 170 feet. The dressing for the wound vac has to be this afternoon so pain meds are already on board. They are also going to have to put the Foley catheter back in. He's still unable to urinate and it's torturing him to straight cath him every 6 hours. There's a risk of infection either way, but the Foley is only torture once and since he already has the pain meds it won't be so bad.

We have a glitch with moving him. There is no way around the problem with his biopsies with the center I chose and my second choice won't take him with the feeding tube. So, there's a facility on the Mayo Campus. It runs the gamut from single family dwelling to condo, to assisted living to skilled nursing and hospice. It's 5 minutes away and I toured it this morning. I was please with it and I can be there as much or as little as I want. The rooms were very nice, some with separate sitting areas and some with balconies. I also got to see the therapy rooms and they were very nice. It was also recommended by Tina, our coordinator.

When I got back to his room, he looked at me and started crying saying he wasn't good for anything and he couldn't do anything. So, we've had "the talk" about what has happened to him and what is still going to happen. It was a pretty intense, emotional, morning, but I think it will ultimately turn out to be the best thing for him now. He also cried more with the therapist, but I think he really likes her since she is very encouraging and can get him to respond to her.

All for now, will update when the other stuff is done. They may try to have him walk again this afternoon to see how he does.

Trach has been reduced. Did a lot of coughing but the dr didn't get a lot of junk when he suctioned deep into his lungs. After all the coughing he has relaxed now and is sleeping, with good sats. The dr. said the plan is to see how this goes today and in a day or two take it out completely. I told him he is to be discharged tomorrow and he said if his numbers stay up and he does ok they could take it out tomorrow morning before the transfer.

I have a feeling that he won't leave until Tuesday. It's going to take a little to get everything coordinated between the 2 hospitals. But, today's been a good day so far. And the last few days have been a great lesson to me.

After all the turmoil of Friday, I, again, turned everything over to God. I have a problem with giving it to God and taking it back as soon as the amen is said. This time I left it with him and woke yesterday with the clear mind to make the decision that I had known from the beginning would be the right one. Today, the 2 small devotions that I do daily was on trust...duh! So, I finally got the message, again, and now things are just falling into place. Okay, that's my preaching for the day. All I can say is thank you Lord for your blessings! And thanks to all of you for your continuing prayers on our behalf.

Bill's had a busy morning and it's not finished yet. He has had his feeding tube replaced and is back in the room. We're waiting on the lung dr to come back. He's going to reduce the size of the trach! That's a major accomplishment! We found out that the balloon that inflates at the end of the feeding tube to hold it in the stomach deflated. That's why he didn't feel any pain when it came out, but did feel pain earlier in the day when it was working out.

When I got here he started talking up a storm and told me he wanted some soup. He said he had a terrible night because of all the military stuff! I know they were in a lot suctioning him so maybe that's what he meant. When he got back from have the tube put back he wanted to know if we could go out for breakfast. He wants to go to the Waffle House and get scrambled eggs with cheese, sausage and a waffle. I told him that as soon as he could do that we would go.

I'm feeling better about my decision for placement and I told Dr. Hosenpud that it's more for my peace of mind that he go to the acute care hospital until the wound vac is gone. And, the aide that sat with him last night said that she did her clinicals there and that it was a good place for him.

As soon as the trach is done I'll update this again. So far so good!

Well, I thought I was done for the night. But, as we were moving Bill from the bedside comode to his chair his feeding tube fell out. We thought at first that it had just disconnected between the "feeder" and the tube, but the tube came out of his stomach! So, now he has a hole in his belly! The drs. have consulted and Dr. Hosenpud was not in the hospital so Dr. Keller, one of the lung transplant drs. came and looked at it. He has consulted with the GI docs and they will probably replace it tomorrow. They have now had to change his anti-rejection meds to IV to go through the PIC line instead of through the feeding tube. Poor guy! He's exhausted from all the walking and moving and then prodding and poking. He's finally back to bed and asleep and she's going to have to wake him up to give him his Prograf which goes under his tongue! When the sitter gets here, I'm going home!

I'm pretty sure that he's going to go to the acute care hospital, at least until the wound vac is done and maybe until the feeding tube is discontinued. Then he can go to the rehab hospital we originally wanted him to go to.

I toured it this afternoon, and Mayo it ain't! It's a little shabby, but clean. The rooms are small, but most of them are private and the room he would be in is where they would be working with weaning from the trach and the respiratory therapists have their workroom right there. There's a good size cafeteria that is open 7 days a week, only until lunch on week-ends, but that is better than Mayo since theirs is closed on week-ends. They would be able to administer his anti-rejection meds and I could bring them in and give them to the pharmacist since Mayo Speciality Pharmacy is supplying those.

The only glitch is that they contract with another hospital for testing and such and there may be a problem getting him to Mayo for his biopsies. I need to talk to Tina and the case manager about that Monday. I felt pretty comfortable with it. And, his physical therapist that he likes so well came in today and she said it's a good place (although she's not supposed to voice an opinion).

And speaking of physical therapy, after Bill did his leg stretches, he walked from his bed to his door, 12 feet. After a little rest in the wheelchair he walked out the door into the hallway, 10 feet. Another little rest and he walked a whopping 45 ft in the hallway! He did so well that he got to come back in the room in the wheelchair! Dr. Hosenpud said this morning that he would like for him to be able to walk 30 feet so he should be pleased to see that report!

I'm going to try to see the other place I'm considering tomorrow. It's close to the one today, I was just in the wrong lane and didn't feel like turning around!

This is probably all for today. I don't think anything else is going to happen and I don't know how much longer I'm going to stay. I should stay until the sitter comes, but I'm getting really tired now.  So, I know there was lots of praying going on last night and I thank you for them. I'll let you know how tomorrow goes!

Even after a pretty sleepless night, and a very early morning, I've made some decisions and feel at peace with them. One of the places he was referred to is a long-term acute care hospital with an extensive rehab program. They are also wound care specialists. I feel that he still needs the acute placement over the skilled nursing. I'm going to try to go by this afternoon and speak with the case manager that was contacted yesterday. I also just saw one of the physical therapists here who really got Bill moving and he thinks that in a skilled nursing center he would just get pushed aside.

My main concerns now are the medical problems and not the physical disabilities. And, whether it be insurance or the hospital itself, Mayo is a speciality hospital. They don't have just a "regular" floor for sick people. So, from their point of view, Bill does not need to be here.

I talked to him about it a little while ago and I think he understands.I also told him that it's not a nursing home but a place that can care for all his "stuff" and still help him get stronger. I told him I was going to go by today and he said he was just going to sleep this afternoon anyway, so it was ok with him.

He started out having a great morning. He was very alert when I got here and we put his valve on and he started talking up a storm. His nurse and PCT are both named Lisa, so it won't be hard to remember who he has. We've had the tech before, when he had the LVAD and she's a gem. They got him up early and in his chair, but he started complaining of pain. He also said he needed to use the bathroom but didn't want the bedpan because it hurt. So, we brought out the bedside comode and he used it. But, he really started complaining of pain in his belly and groin and was really nauseous for awhile. Dr. Hosenpud has ordered, or is going to order, some meds for that. He's had a Percocet and is feeling better back in bed. He keeps going to sleep and then his O2 sats drop and he starts beeping. He just can't win!

Thanks to those who voiced an opinion. They really helped and I feel peaceful about the decision. Hopefully they can take him. Dr. Hosenpud said that if we have to wait until Tuesday since it was all done so late on a Friday that it would be fine.

Bill's getting gurgly so I'd better go suction up the secretions. I'll keep you posted.