It's been two and a half weeks since we last fed Jonathan through his g-tube. It feels like this long road is almost over. His pediatrician suggested that we try it again at his four year check up. He thought Jonathan might pick it up and do better if he was given a break overnight like we all normally get. We had gradually stopped feeding during the day and all that was left were the night feeds.
We noticed that Jonathan seemed more alert and less lethargic after we stopped the night feeds. He definitely started drinking and eating more than usual. We also talked to him about it a couple times, so he knew what was going on and that he was to pick up the slack. I think the fact that he's older and more mature has something to do with the good results this time.
Not only is he doing a good job of eating on his own, but he's maintaining his weight too. We recently took him into see his doctor and she was very happy to hear both of those things. The tube can come out for good if we can go three months without using it and he keeps progressing. The nurse said that when the three months is up we can deflate the tube ourselves and take it out, no surgery required. The area will close and heal on its own.
Last weekend we went out to eat and something interesting happened. He was doing fine and then tasted some marinara sauce. He instantly got that look on his face like his insides were doing cartwheels and he wanted to throw up. In the past he would have probably lost it, but that day he kept it until control and then kept eating a little bit. I think what happened was the marinara sauce caused him some significant heartburn or acid reflux. I still think something like this was contributing or complicating to his issues in the past. This isn't the first time he's expressed this in some fashion related to tomato based sauces. We went a few months with no sauce on his pizza, for example. So, there will still be things like this to manage in the future, but it's relatively manageable compared to where we started.
If you need a reminder, where we started was Jonathan him not eating at all and only able to keep down formula from the pump at a drip rate so slow that his feedings would take over an hour to complete, several times a day. On really bad days we would have to back it off even more and have him connected to the pump all day long. He was vomiting once, if not twice, a day for over a year, so much so that we just stopped going out much in public since he was likely to throw up at unannounced. He had no interest in food at all.
Going the distance with eating and removing his tube is our next step. His GI doctor is still recommending we go through with a more extensive motility study in August, but otherwise have canceled or postponed other things at this point. As long as he's following a growth curve, albeit the one percentile growth curve, and eating, there isn't much cause for concern if he's eating on his own and completely normal in every other way. Our hopes is that once he starts eating on his own completely, that we'll start to see more gains that we've seen in the past.
It's possible though that we won't see big gains compared to the past. It's possible that even though we stopped the g-tube feedings, the extra food he's eating now really just makes up for what we were giving him at night. In other words, he may have been self-regulating even with the night feeds and just eating less, and this is just the way he was made. We'll obviously be watching things closely, in case there are any signs of other issues going on. For now, this is really good news considering he's starting part time school this fall. Although progress seems slow, it really isn't when you look back over the past year or two. If you look at the entire picture, we're definitely making progress all the time and headed in the right direction.