HE PASSED! Bill passed his swallow test with no abnormalties seen. The only thing that Lisa saw was that sometimes he didn't get something swallowed completely the first time so he swallowed again, which we all do at times. But, oh my, what a ruckus passing has caused!

I asked his nurse Magen if they had done the test since I hadn't heard anything and she said they did and she would let the speech therapist go over it with me. Ok, no problem. But, as she was leaving the room she motioned me to the door and told me that she was probably talking out of turn to even say anything but...I assured her that no-one would know that the information had come from her so she told me that he had passed the test with no restrictions to diet, but Dr. Edwards still would not order a diet! I told her what I've told other people, food is very important to Bill and if he can't ever eat again, we have wasted 2 months of time trying to keep him alive, because he would give up. She told me I needed to ask him why, or get the social worker involved and the case manager. A couple of minutes later, as I was trying to explain what the conversation was about, so angry I was in tears, Magen pops her head in the door and told me to be ready. A few minutes Pam, the social worker, came by and asked if we could have a talk. We went to the conference room and I told Pam the same thing. She was just astounded at Dr. Edwards decision. I told her how I refer to him as Dr. A.A (Arrogant Ass) and she agreed that he is arrogant and that there is a lot of ego involved with him. I think that's one reason he doesn't round until late in the evening, family members are usually not around at that time of night, and patients are usually sleeping. So, we went over some options.

She said that we, and since Bill can talk now and be part of the process, he can request a different dr. at any time. He also has the right to demand a diet since it is a quality of life issue. She did tell me that, if she recommended to the restorative care medical director he needed to intervene, he would not hesitate to step in and order the diet himself. We discussed involving Mayo and some other options. We decided to contact Mayo and to see who they would recommend oversee Bill's care. The Dr. they named was none other than Dr. Shirwany! I've dealt with Dr. Shirwany before and like him a lot. He's very reasonable and listens to the patients and family members concerns. They were also going to contact Dr. Threlkeld about the antibiotic Bill is supposed to be on since the heart was a mismatch. Dr. Edwards always takes him off if because it can cause kidney function to deteriorate, but Dr. Patel explained to me that it's easier to deal with kidney function issues than the virus the heart was exposed to if it should rear its head and become active.

Bill may be discharged to skilled nursing this week since the main reason for restorative care was weaning him from the vent and getting the trach out and those have been accomplished. So the plan right now is not to transfer care from Mayo to Memphis. Bill is much stronger than he's been in a long time and he still hasn't had much physical therapy. So I have a call in to Stephanie and I'll hear back from her Monday. If Bill needs to see a cardiologist, or if he has another hospitalization, we will request Dr. Shirwany, on Mayo's recommendation, and not have to deal with Dr. Edwards again. We also have 2 options for the diet and, unless Stephanie suggests otherwise, we are going to send the results of the study to the nursing home and let that doctor order the diet. Or, we can have the results sent to Mayo and let Dr. Patel or Yip order the diet and send it to Memphis.

Now, back to Dr. Edwards. When Phyllis, the case manager, called his nurse, she told her that both Bill and I were told up front that he would never eat or drink again to avoid aspiration pneumonia and were in agreement with that. So, I started calling the girls. Emily did not remember him saying that and she was with me continually the first few days. Aimee did not recall that, and she was there when the suggestion of the peg tube was brought up and Mary Rose did not remember that and she was there and explained to Bill, who was awake by then, in front of the GI doctor that it was only to make sure he got the proper nutrition if he wasn't maintaining with food and he agreed. The GI doctor also said it could be that it wouldn't be permanent. So, I started going through back entries here and in my handwritten notes.

On Dec. 2nd, the day Bill was admitted, Dr. Edwards did say that he needed the peg to insure that there was no more aspiration pneumonia, but he qualified it to say without a lot of therapy on swallowing. I have that both places. Now, keep in mind, this was the day he crashed and had not been at the hospital for 12 hours yet. Dr. Edwards is also the one who, within 2 days, had made the decision that he just needed to be in Hospice. So, looking at that aspect, he had written him off in the first critical hours and yes, a peg made perfect sense if he was going to die within a week. But HE DIDN'T DIE!

When I was talking to Dr. Fox yesterday he said he can't believe how far he has come and I called him out on it, saying they didn't expect to ever get this far and he just grinned and said no, they didn't. Bill just said I'm a tough old bird.

Instead of Dr. Edwards coming to talk to us himself, he sent the palliative care doctor, Dr. Mullinax. He is a very nice man, soft spoken, gentle and he was calmly explaining to Bill (I was on the phone outside the room with Mayo) why Dr. Edwards wanted to take these precautions. He said they were referring to him as their miracle patient and they wanted to keep him the miracle. I wanted to say, but didn't, to let the miracle continue by letting him eat. I also wanted to remind him, but didn't, that the mantra of palliative care that he has quoted to me several times is that they don't add quantity to our days but quality to our days. So if this isn't a prime example of adding quality to Bill's days, I don't know what it!

Everyone, except Dr. Edwards, who is seeming more and more like a God to the people at the hospital, is in Bill's corner, including the dietician. She's ready to make any changes or adjustments to Bill's tube feeds as necessary.

The one thing that sealed the deal for me that Dr. Edwards will not treat Bill after this hospitalization, is a statement he and his nurse/coordinator both made to the social worker and nurse manager and that is "He's not really our patient"! Really?!? Just because you didn't perform the transplant he's not your patient? Then, as far as I'm concerned, you don't make another decision about his care! But, rationally this is not the time or way to say that.

After making several phone calls last night a diplomatic way to handle it was formulated. "Upon recommendation from his transplant team from Mayo, they refer their patients to Dr. Shirwany, whether it be for transfer of complete care, or for intermediate care when a trip to Mayo is not feasible". Maybe that won't crush his ego too much. I really don't care about his ego, but I don't want to cause trouble for Dr. Shirwany either since they work out of the same group.

So as of right now, we're holding off until Monday when I hear from Stephanie. I'm also going to go to the nursing center we have picked in Jonesboro for a tour. I've requested one through their website but haven't heard anything yet, so I'm just going to go in cold. It's usually better that way because they aren't really prepared to "show off" all the good and not the bad.

Bill did well in physical therapy. He had a new therapist who brought in a walker for him to use to stand instead of the stander and he used it to get to his commode and then to the chair. She was impressed with how strong he was and next week is planning on getting him out into the hallway for a bit. Depending on who is nurse is this week-end I may see if we can put him in a wheelchair and take him for a little spin. I think it would do wonders for him to see something other than that room.

OK, I've written a book again. If anyone has any other suggestions for any conversations with doctors, because I'm sure there are going to be some, let me know. This isn't over yet. I did actually surprise myself by staying very calm through most of it, which surprised me.

 I'll keep you posted!