Yesterday afternoon we had our consult with the surgeon who will place Magnus's G tube. I'd have to say it did not go very well.
We found out about the appointment through a voice mail message last week, saying that we were to come in at 2:30 on July 14th. They did not leave a phone number, and didn't tell us if a surgery date had been scheduled, so that was our number one question going into the appointment.
So our appointment was at 2:30, and they told us to arrive at 2:15. Since we're not suckers, we showed up and signed in at 2:25. And waited. We weren't called into a room until 4 p.m. A nurse practitioner greeted us, and we asked her if she knew if Magnus's surgery had been scheduled. "I'll find out," she said. She disappeared into the hallway and we never saw her again.
Finally, the surgeon came in, along with someone else who never introduced herself. We asked her if the surgery had been scheduled, and she told us that we had been scheduled for next Thursday, July 22, at 7:30 a.m. "Are you sure they didn't tell you?" she asked, "because I find that very strange." I assured her that the surgery date had not merely slipped our minds.
We've been planning to leave for a big family vacation on the East Coast on July 31st, so that was the first thing we asked about. The surgeon said that Magnus was likely to be out of the hospital by then, if everything went smoothly, but that it would not be a good idea to travel with him so soon post-op, setting up problem number one: if we go ahead with Magnus's surgery as scheduled, we will have to cancel our vacation. It would be one thing if this were just a trip for fun, but this was going to be the big opportunity for Magnus to meet a bunch of his relatives. If we cancel, I don't know when we'd have a chance to do it again, probably not until next summer at the earliest. My sister had a baby in February, and I still haven't gotten to meet him, either.
When we mentioned this to the surgeon, she was very clear that she thought that waiting was a bad idea. However, she also made it clear that she didn't know anything about the particulars of Magnus's case, and that the urgency in scheduling this surgery was at the request of his cardiologist. When we met with his cardiologist last week, she did say that she hoped he could have the surgery before we left, but didn't seem quite so emphatic about the dangers of postponing it.
The next thing we talked about with the surgeon was Magnus's reflux. When we mentioned that reflux had been a major factor in his eating problems, she told us that if he had reflux, that he should undergo a fundoplication when he had the G tube inserted. I told her that I had major reservations about the fundoplication surgery, and that I didn't want to consign him to a lifetime of problems with gas and an inability to vomit. She stared at me for a moment, and then just said "well, that's my recommendation."
My next question was why he wasn't a candidate for the endoscopic surgery, and she said she didn't know, that someone else had made that determination. I asked her what kind of G tube he would be getting, and she said she didn't know, that it would depend on how things went in the O.R. She also said that the determination of whether the surgery could be done laparoscopically or not would be made in the O.R. Really, she wasn't able to tell us much of anything except that the date for his surgery had been set.
So now we are faced with the decision of whether or not to reschedule his surgery. Medically, of course, the answer is that he should have the surgery as soon as possible. But I'm not sure exactly how urgent the situation is. He has been doing pretty well with eating lately, and has been steadily gaining weight, albeit at a slower rate than we would like to see. And that could change at any time. His reflux is a moving target, and it seems like as soon as we find a combination of meds that work, they stop working. He's been malnourished for a long time now, will three more weeks really make a difference? I don't know. And if this surgery is so urgent, why has it taken more than a month to schedule it? Anyway, we have a big decision to make, and we need to do it soon.
4 months ago