b) guilty as all get-out
When Bob was discharged from the hospital, I was trained by the nurses in Acute Rehab on how to feed Bob through his G-tube. At that time, the nurses told me to always "keep the head his bed at a 45 degree angle" or else he would "aspirate and possibly die".
Right before we left the hospital, a nutritionist was sent up to Bob's room with the prescription for Bob's Jevity (the nutritional liquid food) and again, I was warned, to "never, ever lower the head of his bed less than a 45 degree angle."
When Bob arrived home, the home care agency sent a nurse set up the feeding pump and show me how to use it. Again, I was told "never let him lie flat, always keep the head of the bed at a 45 degree angle" or else "the feeding tube will back up and fill his lungs with fluid and he could drown."
I remember asking someone if that was just when he was feeding or all the time. And was told to never let him lie flat, ever, because the tube could cause fluid in his stomach to backflow up his throat.
Back then, the only thing I knew about feeding tubes was that Terri Schiavo had one and they turned it off and killed her. That was the extent of my feeding tube knowledge.
I did not see the procedure when they inserted Bob's peg tube, only knew what I saw from the outside--that long, thin rubber tube disappearing into a hole in his belly. I imagined that behind that hole, Bob's feeding tube was some sort of coiled contraption inside his stomach, sort of a fragile snake, that was going to pop or explode if I wasn't careful and all his stomach contents would shoot right out of his mouth and he would die on the spot.
So, like a good, careful wife, I followed the directions to the T.
I remember at Outpatient Rehab, when the therapist wanted Bob to lie flat on an exercise mat and I freaked out, telling him that "Bob could never lay flat, because he has a feeding tube!" And therapist apologized and told me that he had "forgotten about that" and went and got some pillows to elevate Bob's head.
I also remember the very first at-home PT, who gave me a sheet of exercises but told me that Bob must not do any exercises on the list that involved twisting or bending his stomach because that would damage his feeding tube.
I must admit, I was terrified of that feeding tube, terrified that I would do something wrong...
Back in January when Bob had his tube replaced and I watched that doctor take his old tube out, I was quite astonished to see that inside his stomach was only about an inch of rubber tube and a small rubber balloon shaped like a sea urchin about the size of a half-dollar which kept it from pulling out his stomach. That's all it is. And I started thinking, well, why the hell can he never lie down flat? Why would stomach contents backflow if that's all there is to that tube? I mean, when I lie down at night, my dinner doesn't shoot out of my mouth.
So I broke a few of those rules and let Bob lie flat while we did exercises. And I started having Bob do those trunk bends and twists and man, poor Bob's stomach muscles are so weak from long-time neglect....
But I kept that head of the bed elevated at a 45 degree angle when giving meds, daytime feedings and when the feeding pump was turned on at night. Because, you know, I didn't want to drown him.
And now he has all these neck problems from being kept in that 45 degree position. And the OT tells me that we need to let him sleep flat--but you know, I can't let him drown. So I get a bright idea, which was to start his pump earlier, at a faster flow rate, while we watch our nightly movie and then disconnect it at night so he could lie flat. I told the therapist my idea and she said that I'd better check with a doctor before I did that because I could possibly damage his stomach....
So I called a nurse I know and asked her and she devised a plan where I would do half of his dose in the evening and the rest in the morning, but I would then have to flush the pump with water so I could reuse the feed bag and I needed to keep Bob upright "at least two hours after feeding" before putting him down flat. All of this sounded like a big pain in the ass. Then she said, "you know, you can lower the head of the bed to about a 33 degree angle and still be safe."
I tried that 33 degree angle, but I wasn't sure exactly where that 33 degree angle was---and I was terrified if I put Bob at, say, 32 degrees I might kill him, accidently--of course.
The other day we were at Bob's primary care doctor's office because that doctor cancelled the antibiotic order because he wanted to "see Bob" first. The doctor comes in and tells me that the reason he wanted to "see Bob" was because he decided not to order an antibiotic after all, but he would order one if Bob started coughing up "green stuff" but he wasn't worried about the brown stuff. He said, he wanted us to come to the office because it was easier to tell me this in person than trying to explain this to me on the phone.
I tell you, after 45 minutes waiting for the wheelchair transport to take us to the doctor's office, and another 30 minutes or so spent in a terribly cramped men's room with Bob trying to pee, I just about flipped.
But since we were there, I told him all about Bob's neck problem, what the OT said and asked him about the 45 degree angle vs. a 33 degree angle on the head of the bed while the pump is running at night. And do you know what he said?
"Well, Diane, you know you don't have to keep the bed raised that high."
"All you have to worry about is that Bob's head is elevated higher than his chest.
So don't let him lie completely flat.
Just have the head of the bed tilted a bit and his head propped up on a pillow."
And I said, "Why the hell did all those people tell me it had to be at a 45 degree angle?!!!"
And he said, "They always say that. Because that's what they do in the hospitals and a 45 degree angle is a 100% safe angle. But it's not really necessary."
But the problem is, when I do lower the bed, Bob's neck is now so twisted and the muscles so tight that it is stuck in the forward left leaning position and his head will not tilt backward at all....
Like I said, I am feeling a bit:
b) guilty as all get-out
and add to that
c) like a complete idiot