We have to thicken his foods and drinks, so it is taking him longer to eat and drink his meals. He no longer likes applesauce or yogurt, so he is regressing. He is not taking in enough liquids, which worries me. The dietitian said for his age, he should be getting around 30 ounces, and that is besides food. He is getting maybe 10 on a good day. We met with the Ketogenic doctors today, and they also suggested the G Tube. We have been hesitant about this decision, but the more I see him struggling to eat, I think we may need to do this. He needs to get the calories and fluids to be the best he can be, and to move forward developmentally.
We want to meet with the GI doc, and then move forward with this. I'm sure it will be a big change, but I won't have to worry anymore about if he is eating or drinking enough. Plus, it will make the Ketogenic diet much easier. They make a specialized formula that you just put in, and there you go! I want people to realize that this doesn't mean we are lazy, or that we have given up. There are reasons this is a good idea...1) safety, so he doesn't aspirate his food or liquids, 2) we can make sure he is getting everything he needs, 3) the Ketogenic diet will work so easily with this. I feel good about this, but with the summer being so busy we may have to wait a month or two. We also have a vacation coming up in August. I hope I can feed him well enough until then.
The G Tube is not permanent, it can be reversed. Although he would probably have it in for at least a few years, or until he can pass a swallow study and we know he is getting stronger and can eat.
It would require surgery to put it in, and it is covered with a button. He can still take baths, swim, etc. I foresee this making Church a difficulty because of the time it is, and going on dates for a while, as we learn how to do this. I want to make sure we learn all about it before we do it, but I also want to make sure he is safe.
To be honest, at this point, I am pretty frustrated with feeding him. It is taking twice as long as usual, if not more, and he isn't taking in even half what he used to. A lot of times he even rejects his anti seizure medicine, which he has to take. It really worries me. Since I am his mother I am really his advocate, his voice. I need to give him every advantage, and to make things easier for him so he can progress and live a full, happy life. I am actually excited for this G Tube, I really think it will help everything. And if the Ketogenic diet works, even better! Then we can control his seizures, and help him move forward.