Thursday, July 15, 2010

Surgical Consult

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.


  1. I met with our daughter's GI doctor today and I asked her about the g-tube exacerbating acid reflux and she said that it does not cause the reflux to get worse. I also asked her if the reflux would get better with time as it does with most babies as their GI systems mature. She told me that with most cardiac babies reflux is an issue and that the majority of them outgrow it by the time they are about 1 years old. I asked her about the fundoplication as this too is a concern of mine and she said that it might be necessary but it would be something that they would evaluate much later down the road.

    Don't let them sell you a load of goods because that is what the protocol is. Each child is unique and while protocol is great as a guideline it should not be the rule. Treating our kids is not like baking a cake. You can't follow the recipe every time and be guaranteed a cake will be the result. Get the g-tube but forgo the fundoplication until a later time if that proves to be necessary.

    Good luck on the placement and the decision making.

  2. Sabrina, thanks for your comment. Isn't it amazing how two different doctors will tell you completely opposite things without indication that anyone could possibly think anything different? The surgeon told us that G tube placement would "definitely" make reflux worse, but Iggy and I agree that a fundo should be a last resort.

  3. Ugh...sorry things aren't more black & white. Sounds like a difficult decision. But like you pointed out, it took quite a while to get surgery schd. so may be it isn't as urgent as the dr. implied. Maybe a couple more weeks is ok, especially if his eating is improving. Good luck...we're thinking about you guys!

  4. Jen, it never ceases to amaze the spectrum of opinions that these doctors have regarding the correct course of treatment when it comes to caring for these children. It all comes down to what the protocol is for that institution and his/her experience. Our daughter's reflux is pretty severe and I am hoping against hope that it will improve with time. The last thing we want is to have her undergo yet another surgical procedure especially one as nasty as the fundoplication seems to be.

  5. Hey Jen. Just to throw out 2 things from my experience with C getting her G tube. The first is, I would ask the GI doc who did the scan to explain to you in more detail why M cannot have the tube placed with endsocopy. The GI told us as well that C may have to have hers surgically placed but she has other issues. She has heterotaxy (nothing on her inside is where it should be) and she had her LADD procedure to correct malrotation (causing scar tissue around the stomach area). Yet, the GI doc was not only able to place her tube with endoscopy but he did it in literally 5 mins. It took her longer to be sedated and wake up from the sedation then to place the tube itself. My opinion, I would push for a better answer on why surgery versus endoscopy. All the GI doc needs is a good spot on the tummy that is not being obstructed by scar tissue or intestine. Second, C has horrible reflux with copious amounts of vomiting. We actually thought she turned the corner last month but the vomiting is back. However, even with the G tube (and being told the tube can make refulx worse...opperative word being CAN) her vomiting and reflux is no worse than it was 3/4 months ago, long before the tube placed. I know you have a very hard decision ahead of you. I hope you are able to get the answers you need soon. Wish I could offer more help.

  6. Thanks, Ashley, you're right, I should follow up with the GI docs about why they decided Magnus is not a good candidate for endoscopy. I got the sense that maybe they're just being cautious.