This is going to be another tough one to post. What started out as a great day turned into Beth's Very Bad Day. But, there are always solutions to problems and I'm finding out I'm getting to be a pretty good problem solver.

Bill was awake yesterday when I got there and "chatty". He said he slept good and all his numbers were good. But, he said he was choking and couldn't breathe. He was coughing some stuff into his tubing, which is good. I told him he was breathing fine and getting plenty of air and he just needed to calm himself down a little. He did and I made sure that his Xanax was added to his morning meds.

He didn't really want to work with speech yesterday and didn't want any ice chips. He acted like his throat hurt when he swallowed, and it may have from all the coughing he was doing. The cannula had shifted some too, which may have been hurting. The respiratory tech said that he's lost some muscle and fat in that area and that lets the cannula move more, even thought it's not supposed to move at all. I think that because it's the longer one, when it moves it irritates his throat.

He did work really hard with OT, did his arm exercises and washed his face and combed his hair and then took pegs off and put them back on a board alternating hands. He did that really well.

Occasionally he would still say he couldn't breathe, but again, his numbers were fine. They were only getting a little stuff out when they would suction and the secretions aren't really thick. He is still on antibiotics until Monday, I think.

Dr. Muir came in and we chatted for a bit and a little later his nurse said she needed to draw some blood because they wanted to check his iron, so his anemia must be trying kick in again.

Just after lunch a different nurse practitioner came in for the lung group and she said she was leaving him just like he was, on CPAP. I just thought they wanted to give him 48 hours on it instead of 24. And then Dr. Henderson came in. He's one of the lung physicians. This is where the day tanked and I'm just going to type my notes verbatim instead of trying to re-word them. You'll understand how I felt anyway. So here goes:

"Dr. Henderson came by and was not encouraging. He said they had a multi-disciplinary meeting yesterday and they think it's time he's moved to a facility for more long-term vent weaning. Doesn't mean they're giving up-according to him. I got the feeling from him that they are. My opinion-they are too conservative. He's always going to have secretions. He is always going to have congestion. Waiting to talk to Phyllis (nurse case manager) about options-not looking forward to that. I don't think they're even going to try trach collar now. I just want to throw up and cry. And I still have to explain it to Bill. Need to do lots of research and get lots of advice. Bill said he feels good and he's going home. Had a little cry whin I told him what dr. said so now my mind is starting to work again...just thought DR. Henderson has seen him a total of 3 times, 1st to replace trach, then Weds. on rounds and then today. I wish we could se a "1st string" dr like with the other group. We saw Dr. Fox and Dr. Munday but not Dr. Williams. I'm surprised we see Dr. Edwards. Wonder who is on for the week-end".

I'll give more thoughts on this in a minute. I wanted Bill to get in his chair but the nurses wanted to wait until PT came to see him. He didn't want to work with her, but he did the leg exercises and then they put him in his chair. He wanted back to bed after 10 minutes, but I made him stay the entire 2 hours. He started to get a little agitated at one time and his heart rate went up along with his respirations which go up to 40. But I just looked him straight in the eye and told him he was working himself into panic mode and to stop it and calm down. His heart rate started going down and his respirations dropped to 30 immediately. None of the alarms sounded on the vent so he was good. He made his 2 hours in the chair and as soon as he was back in bed he was his happy self and it was time for me to leave and was fine.

I made some more notes on my thoughts and after being upset and feeling blindsided, I got angry. We've been compliant with everything so far, even not giving in to a sip of water or coffee. We've followed the rules So, starting today I'm making some demands. I checked with nurse daughter to see if I'm within our rights and I am. Bill also signed that advanced directive which will help (need to get my copy and put in my backpack).

Since I know Bill better than anyone else there, and since he has done so well on CPAP, I'm going to tell whichever pulmonary person we see, that as long as I am there, I want him on trach collar. This of course is assuming that he is not having any problems with his numbers and I've watched them enough to know when he is having problems or not. And if I'm wrong, then at least we tried. I don't care if they put him back on CPAP at night when he's ready for bed, or if he's having problems, but we're going to do it they way they do it in ICU, just do it, but have someone there to talk him through, which is why I only want it done to start with when I'm there. And if he has problems, then I'll know he's not ready. I know that this is a process, they've told me that enough, but as Dr. Threlkeld said, sometimes you have to throw protocol away and treat the patient not the process. So, starting today I'm going to insist on that.

I'm also going to insist he get into his chair every morning, even if he doesn't want to, and they have to be more aggressive with physical therapy, not just basic leg exercises. He needs to stand and the cardiac doctors want him on his feet to get those lungs stretched.

I also want his Xanas order changed from PRN (as needed) to scheduled, at least his morning dose. But, I might do both as the nurses aren't giving it to him after I leave if he gets agitated. They ask him if he wants it and he says no, so just give it to him and don't give him the choice. This may sound cruel to do to him, but he doesn't know what meds he takes anyway.

Now, more verbatim notes: "He has declined since coming to this unit. Was on trach collar when he arrived-1 panic attack 1st night and on vent, when he hadn't been on vent in ICU from 1-7 through 1-13, trach collar only. (The 13th is the day he was transferred). Was standing with a walker and marching in place. Standing, pivoting, shuffling with a walker to his chair. He did not need OT. Speech therapist was afraid of the teepee trach collar so it wasn't going well".

"Maybe since he's declined so much here it would be better to move to another facility-as long as they are aggressive".

When I was talking to Bill's daughter Mary about this (she's the nurse) the first question she asked, that I hadn't even thought of was why a family member of the patient was not at the multi-disciplinary meeting? This meeting is where all of the different disciplines, medical, therapy, social worker, case manager get together to discuss progress/nonprogress of the patient and give target dates for meeting certain goals. So, why wasn't I told about this meeting happening, and if it was when I was at the doctor the other day, why wasn't it re-scheduled for when I could be there?

To show you just how much he has declined since being moved, I made a little collage of pictures. The first one with him holding up his arm is the day he was moved, Jan. 13. He is on trach collar. The one on the left in 2 days later, on the 15th. He's sitting in his chair but he is on the vent. The middle one is Jan.29 and the one on the right is Feb. 15, one week ago.

You can see such a difference in him, it's sad. And makes me angry at the same time.

Now you know why I said it was Beth's very bad day, and there may be another one today. I also have to leave early to meet a repairman. I don't remember if I said anything about a leak in our storage area and the ceiling falling in, but I'm meeting with someone this afternoon to get esitmates for repairs. 

But, on a good note, baseball starts today! And just to get to my brother a little...Go Cubs!