It's been an eventful couple of days.
At Thursday's cardiology appointment, we requested a GI consult, and somehow were magically able to get an appointment the following day. Our GI appointment was mostly pretty uneventful. They approved the cardiology plan to supplement his feedings via NG, and gave him a prescription for Prevacid, since it seems clear that the Zantac isn't really working for Magnus's reflux.
We had decided to wait until Friday night to insert Magnus's NG tube, partly because Iggy had to work late Thursday night, and also because we figured it might be best to try out his new nighttime NG feeds on a night when I didn't have to go to work the next day.
So when I got home from work Friday, we got down to business. We swaddled him, we prepared all the bandages to keep his tube in place, we got out the tube, and I took a deep breath and started to insert it.
Inserting an NG tube is really pretty straightforward. You stick the tube in one nostril, and then just keep pushing it until it gets down to the stomach. Except the first time, it didn't work. The tube just got all bunched up in his throat, so I pulled it out and tried again.
The second time, the tube went all the way in, but then he immediately vomited it back up. Ditto for the third time. By then, all three of us had had enough. Magnus was screaming his head off, and Iggy and I were about ready to cry, as well. I sent a panicky e-mail to our cardiologist, and decided that we could bring him to the urgent care clinic the next day to have a nurse insert the tube. But it was pretty unnerving that we would be unable to reinsert it.
Our cardiologist e-mailed me right back and was very reassuring. Take him to urgent care tomorrow, she said, and you guys can get more training next week. It was exactly what I needed to hear...a little pat on the head.
So this morning, I brought Magnus in to urgent care to have the tube inserted. Iggy had to go to work, so I was by myself. With great struggle, the nurse and I managed to get the tube inserted, but she had to call another nurse to help check placement, and Magnus got so upset during the insertion that he screamed until he turned blue, and then vomited up a bunch of bile afterwards. I think even the nurse was a little bit traumatized. She suggested that we stick around for a little while to make sure he was tolerating the tube, and we did. He seemed to be OK, although not very happy, so after half an hour or so, we went home.
I think he was mostly asleep on the drive home, but as we pulled into the garage, he started to fuss. As I gathered up our things and tried to comfort him, I accidentally dumped the contents of my purse on the garage floor, and somehow, that was the thing that sent me over the edge. Magnus was crying, and I was crying, and I just felt completely devastated, knowing that Magnus was going to have to live with this horrible tube that was nightmarish to insert, and then probably uncomfortable for him all the time. Even as a 6-week-old, he managed to pull his tube out on a regular basis, and I imagined that surely things couldn't be any better now. Since we couldn't do it ourselves anymore, how often was I going to have to take him to the doctor's to have the tube re-inserted? Was I going to be driving him to the clinic several times a week, skipping out on work, and having to shell out a $10 co-pay, plus $6 for parking, in order to have this incredibly horrible thing done to him?
I managed to pull it together and bring him inside. I put him down on his sheepskin to play, and he actually cracked a smile and seemed to be doing OK. I left him there because I was way overdue to pump breastmilk, so I sat down to do that. About 10 minutes into the process, I noticed that Magnus was fussing a little bit. His back was turned to me, so I couldn't see what was going on, so I just talked to him and hoped he would settle down, but he didn't. I stopped pumping and went over to check on him. And wouldn't you know, he had pulled his NG tube entirely out. The outside part was still taped to his face, but the part that was supposed to be in his stomach was just flapping around freely.
At this point, it became clear to me that an NG tube just wasn't going to work for us. We had gone through so much to get this tube inserted, and then it didn't even last 2 hours! There's really no way you can prevent someone from pulling out an NG tube, short of taping over their entire nostril, preventing them from breathing. Or keeping them in a straightjacket. Neither of these options seems particularly desirable.
I sent an e-mail to the cardiologist saying that the NG tube was just NOT working out, and that we would have to move on to other options next week.
What other options do we have? Well, it seems that we really only have one. Magnus could have a permanent feeding tube surgically placed in his abdomen, a G tube. While this involves another surgery, it can be done endoscopically, and typically only requires patients to stay in the hospital for a day or so.
The issue there is that a G tube can make reflux worse. Since we think that reflux is a big part of the reason why he's not eating enough now, that's a big problem. For this reason, GI docs often recommend that babies with reflux who have G tubes placed also undergo another simultaneous procedure called a Nissen fundoplication. This typically cures reflux, but comes with its own set of possible complications, including problems with gas, digestive problems, and most alarmingly to me, it makes it impossible to vomit.
So basically, while the G tube sounds very attractive to me, I'm scared that he won't tolerate it without the Nissen fundoplication, and the Nissen, quite frankly, terrifies me.
I don't really know what to do. It feels like we have no good options...the NG just isn't working, the G tube seems like it would create as many problems for him as it would solve, and the status quo of limping along with weight gain certainly isn't satisfactory either. So for now, I'm drinking a big glass of wine and saying to myself that we'll figure it out next week.
11 months ago