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.
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7 years ago
Thanks for the update. I'd like to choke those doctors whose comments don't seem very sympathetic. Obviously, they haven't lived with a very sick baby, and I think I'd invite them to spend a week with you guys for a little sensitivity training.
ReplyDeleteI hope that the surgery is scheduled soon and that things start to take a turn for the better. Sending lots of love your way!
Praying for you that everything works out.
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ReplyDeleteMy daughter was born in February with HLHS and I have found great comfort in reading your blog. It is one of the more concise HLHS blogs on the Internet. After reading your post about the G-tube situation, I wanted to share with you our experience.
ReplyDeleteWhen my daughter was first put on NG feeds they discovered that she had a malrotation of her intestines. The CT Nurse Practitioner suggested that at the time of the surgery to fix the malrotation the surgeon also insert a G-tube because it is the policy of CHLA not to send children home on NG feeds. She told us that since she was going under for surgery anyway it would prevent her from needing another surgery later down the road for the G-tube insertion. We were told that the G-tube might not even be necessary but they were wary of having to put her under general anesthesia for a third time in such a short amount of time.
Basically, the G-tube caused us to stay in the hospital for an additional 6 weeks. The G-tube severely exacerbated her GERD. They had to hook up a catheter bag to the G-tube because she was draining about 75-100 cc a day of stomach juices/bile. After several different studies, the surgeons were at a loss as to why this was happening. She had to have an NJ tube inserted for 7 weeks while the track healed so that a GJ tube could replace the G-tube. We put mittens on her hands, taped the tube from nostril to ear so that she couldn't rip out the tube (she had already ripped out her central lines and a PICC line), and neurotically watched her every move to make sure she didn't rip out the NJ.
The G-tube was placed on February 21 and GJ was placed on April 13. We still get some output from the G-tube port of the GJ but it is minimal and we can cap it. However, she is still being fed on a continuous feed through the J port. Essentially, the thinking is that they want to have her strong, chunky, and healthy before the Glenn. Post-Glenn is when they will really look at feeding orally and through the G - they just don't want her aspirating since she vomits so much.
The upside to all of this drama, is that she is growing. She is in the 50th percentile for her weight. We do have to have Apria deliver our feeding supplies but our insurance does cover all of that including the Pregestimil (I pump but I am not producing enough milk for an entire day of feeding). We have a small backpack that we use to pack the pump in when we go places. The pump is small, very portable, and the battery keeps a great charge.
Her GERD is pretty fierce. When she gags it sounds pretty scary and she is quite the prolific vomiter. The joke around the house is that her Roman name is "Vomitus Explodius Maximus". She is on Zantac and Erythromycin for the acid and motility issues. We were previously on Prevacid and Reglan but it was not as effective of a combination for her.
I don't want to scare you but I wanted to give you an idea of what the "unexpected outcome" can be of a G-tube insertion for a HLHS baby with GERD. Also, fortunately for you, your son already feeds by mouth. My daughter has not really been fed orally (except for a minimal amount of Pedialyte in the CTICU) and we anxiously await that day.
Best of luck!
I hope that they are able to take care of Magnus soon so that you can come home as planned. Although I'm glad that we never had to deal with any of these tubes, I often wonder if having one would have made all the difference for Gabe.
ReplyDeleteHang in there! I'm sure you are just ready for action, and for a fix to be in place; I hope for all of you that happens soon!
ReplyDeleteWe are in Western Massachusetts; are you familiar with the Madden Open Heart Camp? Perhaps in ten years Cora and Magnus will meet up there on one of your summer sojurns back East...and to think I've driven by that camp daily since I was a kid and now I am a "heart mom".