Waiter! Waiter.....

I know every business (and a hospital is a business) has its problems, but you would think that one like this would get it's Shit Together. After both his lunch & dinner trays were wrong yesterday, we started to get pissed off. By the time he got something he could eat, he said he had lost his appetite.

Christian, a male nurse, came in later and said the doctor wanted him to have the liquid supplement in his G-tube, so he hooked it up, showing us all the way. He started it at 100 ml an hour, which apparently was a little too much for Earl to take. He got "full" after about half a can, and the infusion was stopped. Christian said it should be left hanging in the bag and, as long as it was used within 24 hours, it was "fine" -- they "do it all the time". He said the Kangaroo bag with the narrow line would "get clogged" if you don't "leave a couple inches in the bag". Now I am not a nurse or other health professional, but it doesn't take a rocket scientist to know you should not ingest dairy products after they have sat at room temp for several hours. I don't care if they are going directly to the stomach or down your throat. Anyway, a smart, black nurse came in about 4 hours later and threw it away.

We got back to sleep for a while, then were awakened again around 4:30 or so. I knew I would not be able to get back to sleep, so Earl & I were talking & discussing. Every now & then I would tear up (or worse) - he is so strong - and so posititve - even after our discussion yesterday afternoon with the medical oncologist (chemo). Dr. Villaflor asked us what exactly Dr. Warren had told us about Earl's condition. We told her. She asked if we had consulted an oncologist before the surgery & we told her no, that both Dr. Gupta & Dr. Warren felt that given the state of Earl's general health (good), the surgery would be the best option he had. With the swallowing problem that had developed so rapidly, he would have "gone downhill" much faster had he opted for treatments while not being able to eat. She asked what Dr. Warren had told us about surgery following the treatments. We told her that Warren had told us "that is not generally done," but that "he would NOT RULE THAT OUT." She excused herself, called Dr. Warren & talked to him again & came back in. She then, very carefully and much more thoroughly explained that, given the extent of the cancer (it is not only IN the esophagus, but on the outside, the pancreas & the bowel wall) that his condition is not curable or operable.
I heard the words she was saying, but it was like an out-of-body experience. I had been standing--my knees buckled slightly, and I started shaking. As I think about it now, I know that is what we knew on Tuesday, but Warren talked so round-about and it was not what we had thought we would be hearing.
She explained that she would be more than willing to have Earl as a patient - but trips to Rush might get to be too much - we talked alot. Chemo could not be started for at least 2 (closer to 3) weeks after surgery and then radiation would come after that. She talked about the "quality" of his life & extending it. He said he would just be happy to be able to eat again.

By 5am this morning, it seemed to us that since we were awake, and Earl has to go slow with eating, he might as well start now. The breakfast tray would not be here for 4 hours at the earliest. To make a long story short, he got about 4 ounces of supplement in (at a slower rate) before Dr. Rodriguez came in and said he only wanted him to have it once a day, so they took it out. Well, we waited, and waited, and waited, heard the breakfast trays, waited some more, until I again went into the hallway & caught the kitchen gal as she was leaving -- there was no tray for Earl. OK. OK. I explained the situation - had to call down for a tray, which finally arrived about 10:50. By that time, he had again "lost interest" and after about 3 spoonfuls of Farina, 2 spoons of mashed pears (which was supposed to have been applesauce), he drank about 6 ounces of 2% milk & said he was "full". I gave the nurse his Farina & grape juice which he had not drank, to put in the refrigerator for later, in case lunch is late, too.
He had been sitting in the chair (also, the bladder cath came out this morning) - one less "wire"
then decided to rest again. That is when I came here to update. I want to get back now.
Maybe more later.

Funny how we take "little" things for granted.