In which the medical freight train comes to a screeching halt

Yesterday was an interesting day. Readers of the story so far will know that Chris was scheduled to have his NG feeding tube swapped out for another that would go directly into his stomach, a procedure which had been described as "simple" but which had been attempted unsuccessfully on Monday.

When his critical care doc came in yesterday morning, I asked if he knew exactly what they were going to do differently this time. He didn't really know - thought they would try some different sedation. I asked if it there was any other way to do the procedure other than putting a scope down Chris's throat, and he said again he wasn't sure, but that he would look into it. He also said the G.I. doc would come up some time during the day to talk to me about it.

Throughout the morning, Chris shocked and awed the docs and therapists who came in to see him. He was even able to speak a few more words, including part of his name (the Dufresne part, interestingly enough) and the sentence "I'm doing my best." The one person who didn't come by was the speech therapist, the one who had originally made the determination that Chris would need the PEG (feeding tube in the stomach), because she thought he didn't have the tongue and cheek control needed to swallow. I asked the nurse if speech therapy was scheduled to come by, and she said no, because the therapist thought he wasn't able to participate in any therapy. I asked if she could come by, since Chris had improved so much, and the nurse said she'd put Chris back on the list.

I was with Chris all day, except for an hour at lunchtime, and neither the G.I. doc nor the speech therapist came by. At 3:00, an hour earlier than they said he was scheduled, the G.I, gurney came by to pick him up.

I got a little agitated. I had never had the chance to ask G.I. what they were going to do, and if there were any alternative methods to do it. I had never had the chance to ask the speech therapist if she still thought Chris wouldn't be able to swallow.

When I asked the nurse if someone could tell me that Chris absolutely, positively still needed this surgical procedure (which the original G.I. doc had said might now require intubation), she got a little agitated. I asked her when was the last time the speech therapist had seen him, and she saw that it had been 4 days, 4 days during which Chris had made remarkable progress in every other way. She paged the critical care doc and the speech therapist, but neither responded quickly. I spoke with Chris about it, too, and he agreed that he didn't want the procedure. It was called off. (Still, I might add, without the G.I. doc coming to talk to me, even though he was on the same floor a couple of corridors away.)

I called my sister while all this was happening, so she could talk me down from the ledge and give me some of her professional experience. She reassured me that, if the staff had thought I was being completely out of line, they would have told me so. I also remembered that she, along with almost everyone else whom I had told about the procedure, had asked me why it was necessary, if the docs were sure Chris wouldn't be able to swallow on his own. I guess it just took me a little longer to ask the same question with enough force to get the hospital staff to listen.

So, shortly after my blood pressure came down and Chris was re-settled in his bed, the speech therapist came by to do a quick swallow test. She gave Chris an ice chip, which he handled easily, then a spoonful of water, which he coughed on a litte, then some apple sauce, which he swallowed easily. She said that, since there was still a lot of concern about Chris aspirating something into his lungs if they just went ahead and fed him, she would like to schedule him for a modified barium swallow test, but that he looked like a good candidate for that at this point. If he passes that, they might keep the N.G. tube in as backup for a day or 2, but feed him by mouth as much as he can handle.

Thinking about all this still makes my heart race. Why didn't the hospital staff think to ask if this procedure was still necessary? Why did I have to ask these basic, common-sense questions?

I am girding myself to explain my decision to the docs this morning. I am convinced I did the right thing; I just hope it doesn't slow down his return to home.