As you have no doubt intuited from the title of this post, we are still going through the process to get Magnus a G tube. First, we had to wait for insurance authorization to do the upper GI study, which finally happened this past Wednesday. Magnus had to drink a barium solution and then lie flat on a table while they took x-rays of his abdomen to determine if the G tube could be placed endoscopically or not. I was really dreading having to force him to drink barium, since he has emphatically rejected anything we try to put in his mouth that is not breastmilk. As it turned out, he actually did take a few swigs of the barium before deciding it was awful (maybe because he'd been fasted for several hours beforehand), and the worst part of the study was having to pin him down on the table so he would lie flat...he screamed and screamed and didn't want to be held down. At this point, I am pretty accustomed to having to do horrible things to Magnus, and I did what I usually do, which is to talk to him in a soothing voice and tell him over and over again that I am very, very sorry. This seemed to annoy the radiologist, who snapped at me that the procedure was not painful. Well, duh, I know that x-rays aren't painful, but it's still pretty unpleasant to pin your child down while he's screaming.
Luckily, it was over pretty fast...I think the whole thing took maybe 10 minutes.
We were hoping that the study would show that his anatomy was conducive to having his G tube placed endoscopically, which means a less invasive surgery and a shorter hospital stay. We found out on Friday that they determined based on his study that he was not a candidate for the endoscopic surgery, although they didn't tell us why. It could be because the placement of his stomach is unusual, or it may be because he has surgical scars in the area they'd want to go through. We have a consult with pediatric surgery this coming Wednesday, but no surgery date yet. I'm not sure how long of a hospital stay this will be...our cardiologist said about a week, but that sounds really long to me. Some kids spend less time in the hospital than that after open heart surgery, and this is far less invasive than that, even with having to do the more invasive procedure. Hopefully we'll get a better idea on Wednesday.
We've really been trying to push things forward as fast as possible, not just because he continues to not eat very well and not gain weight, but also because we've scheduled a 2-week trip to the East Coast leaving on July 31st. Magnus is finally going to get to meet a lot of his aunts, uncles, and cousins, as well as seeing more of his grandparents and other relatives he's already met. If we can't get this surgery scheduled soon, it's going to have to wait until mid-August, when we get back.
On Thursday of this week, Magnus had a cardiology appointment. His oxygen saturations were a little lower than they had been, which is probably just a fluke, but could potentially be one more thing to worry about. Oxygen saturation monitors tend to be a little temperamental, which is probably what was happening, but his cardiologist mentioned that it could be a result of collateral veins, which would be not a great thing. Luckily, he's going to be in the hospital for several days for this G tube surgery and hooked up to monitors all that time, so if there really is a problem with his saturations, it should become evident. Magnus's cardiologist also wanted to talk to us about the risks associated with the G tube surgery. The risks are all basically related to the anesthesia, and while he's never had problems before, it's always a possibility for something Very Bad to happen when you have general anesthesia, particularly when you're a baby with a serious heart defect. Iggy felt like she was telling us this to scold us for not trying harder to get the NG tube to work, and I suppose she probably was. It is still frustrating, for us, and probably also for his doctors, that something that feels like it should be so simple, getting a baby to eat, is so difficult that we're going to have to go through another surgery and another hospital stay, followed by months or maybe even years of dealing with feeding pumps and feeding tubes and various medical equipment. But we really have tried, and it just didn't work.
Anyway, Magnus has now woken up from the nap he was taking when I started writing this, so I'll have to leave it at that for now, but I'll try to write a little more later about our experiences with his reflux issues, which I think might be of use to other parents who have kids with feeding issues.
3 weeks ago