Wednesday, August 13, 2008

Come what may - time and hour runs through the roughest day - William Shakespeare

PM of the 13th - The physical therapist came and we walked - all the way down the hall (about 60 feet). Then he rested (we had brought the wheelchair), and he walked back also - wonderful progress. Also, he has been in the recliner all morning. After lunch he will take a nap and then we will do it all again. I must say - it seems better here - they have pajama bottoms - and - the house keeper really CLEANED the floors in here this morning - a welcome change. It is a bit difficult to get the nurses in - patient ratio to nurse is much higher - but - they come eventually. They use UPMC's food service, so - same problems there, but - meals come before they are delivered to UPMC, instead of late all the time - that IS a bonus. Lunch today is toss salad, vegetable soup, chicken and biscuits. Not too bad - soup is delicious (they have a couple of soups that are inedible!).

We walked two more times ourselves this afternoon - he is pooped out now! Enough for one day.

I need to see the dietitian or the attending physician or someone - got the menu for tomorrow - it says NA2GM (nothing with salt over 2 grams) - HORRIBLE choices - salt free beef broth, etc. (he was on a regular diet). Called for someone to explain - different people have told me that 1) the Dr. changed it - 2) NOBODY changed it - it came in that way (it didn't) 3) - I shouldn't bother my pretty little head over it - that was "their business to worry about" and - 4) NA2gm IS a regular diet - I am mistaken! Well - I have asked to speak to the floor Doctor when he comes in, and informed floor personnel that this IS my business , and I take it VERY, VERY seriously. I am asking that NOTHING be changed dealing with his diet w/o talking to him - and ME - first. I doubt the doctor did that, as he told Butch last night that he HAS to eat , and - I should buy him food in the cafeteria to supplement if we don't like the food here - which I AM doing, but - this is ridiculous - if he KNOWS I am going to supplement - why restrict it so seriously that there are no good choices? But - his ankles ARE very, very swollen - so - who knows what is going on. I will find out though. They are trying my patience!

2nd blow-up of the day - they won't let me take him outside! I asked yesterday and they said I needed the attending physician on the floor to sign orders that he could. He didn't come until after 9 last night, so - I wasn't here, BUT - I asked the nurse to be SURE to ask him. She said OK - and - the order wasn't written up. They told me I couldn't take him off the unit again today, and I blew up! I mean - we are going backwards - "is this a prison or a hospital", I asked?. Well, I got to the case manager and expressed my unhappiness, and she - eager to humor me - must be moving the mountain. She just came down and called me out into the hall. "Do either of you smoke?", she asked. I said no and she said she was working on the problem. Well - we don't smoke, but many of the Montefiore patients DO go outside to smoke, and - if I said yes, would we then not be able to go outside? It is a moot point, as we DON'T smoke, but I think you get my point. I also complained to her about the menu situation - and she told me I could meet with THEIR dietitian in the morning , and we could come up with a compromise. Jeez Louise!

I did ask her about the Doctor saying Butch could go home in 6 days and she said yes - 5 or 6 , BUT we might need a few more days here because home is out of state. I mentioned that we could go to Family House for a couple of days, and she said I need to call Tioga County and find out if we can have our pick of Home Health companies, and then she would arrange for continuation of care - a company that services here AND Tioga County. I am not sure why Tioga County has to have anything to do with it - seems to me it is Medicare and Tri-Care we need to worry about, BUT - I will call to humor her. Mellie is checking into the rehab unit at Bridgewater - Methodist Homes is a possibility, also. This is our backup plan which we MUST have in order to spring him - I do not expect to be using it. If I don't have one, they will make a plan for him, and we don't want that to happen! I am becoming desperate to get him out of here, BUT I do need to make sure that he is ready - taking him home too soon wouldn't be smart, although - once we are home, I think he will get better FAST. His color is very good today, and his sense of humor has returned - for the most part. There are many things here that you just can't make into something funny, matter how hard you try!

Our old Doctors came in - from Dr. Gamblin's team -to check the j-tube and wound. I told them they switched wound vacs today - to a smaller, more portable unit. They said maybe this is the one we are coming home with. Everyone has been telling him to eat, eat - and then they gave him a menu where they took all his menu choices away! I don't get it. Anyway, they are satisfied with his progress. The j-tube has stopped draining so much, and the color is better - no tinge of red, so - that is a good thing. They didn't mention the stents - who knows? Maybe he will luck out for once, and not need them.

The rest of the story - I met the Doctor (he came in at 7:30. Nice guy - loves to joke around. He said he would put him back on a regular diet - claims he didn't change it - that it came over that way (no matter that yesterday he was still on a regular diet - oh well!). Also said "no problem" to the going outside - and gave me a copy of the lab work - I have been asking for 3 weeks! He is going to have a CA 19-9 taken tomorrow - that will be great - we can see what it is. Well - mission accomplished! I feel like I have won a war -BUT - I didn't get him outside yet - better not crow too soon - and I haven't seen a menu selection that says "regular" diet on it either - we'll see what happens.

Thursday AM - WHen I got here - the case manager was in here - making sure that Butch ate his breakfast until I got here! She said the dietician is not in today , but we will figure it out. I will know when I see the order form for tomorrow if we still have a problem - I will let you know.

I called Tioga County and they said they are the sole Home Hlth agency for the county - call before we leave Family House - we are back to thinking we will have to stay at Family House for a few days - that OK though - we can do that!.

I will record today's happenings as a draft and publish in the morning - this works out well for me - I don'tforget things this way.


Anonymous said...

Mercy woman! Ain't nursing grand?
As frustrated as I'm sure you are, it does sound like you are on top of things. In an effort to answer some of your questions: 4gm NA
(4 grams of salt) in most hopitals is a regular diet; sometimes it says NAS (no added salt) but usually it just says regular and they don't put salt packets on it.
They may have been restricting his salt due to the ankle swelling; salt can cause water retention.
But if he wrote the order for reg diet that should solve your problems. (wouldn't that be nice).
Just keep his legs up when he's in the chair; VERY difficult to do because it's not comfy, but if you can get his feet above the level of the heart it helps get the swelling down. The walking you are doing is also great for the swelling as it increases the circulation which decreases the swelling. You might also try elevating the foot of his bed a little at night; that might help.
It will be interesting to see what the ca-19 is; will be interesting to see if the "norm" is the same as with no no cancer and after the surgery. I'm not up on this part.
Not real sure what's up with the tioga county thing; if you need names of home health agencies let me know - Visiting Nurse Association has probably the best reputation and they are wonderful but I'm not sure if they service your area. Anyhoot - sounds like you are making progress. We love you. Sharan

Anonymous said...

By the way -- love your daily thoughts; where are you getting them?

Alex's birthday - slide show