DS got his feeding tube back in April so at 25 months old. He has a growth disorder that has feeding issues as one of the main problems associated with his condition. He has always been a slow gainer and a not so great eater but it was never enough to warrant a tube- he basically always just squeeked by in gaining what the dr's wanted for a bare minimum. Some of the deciding factors for us were-
1. He had been in feeding therapy since he was 8months old and his eating skills were slightly improved but he just had no appetite. A kid with no appetite just does NOT want to eat and there is very little you can do to MAKE a child eat.
2. We exhausted the other options- appetite stimulants didn't work, feeding therapy had reached a plateau as far as his progress and what we could do, etc.
3. Every time he got sick we ended up in the hospital because he is hypoglycemic and when a child is sick and doesn't want to eat or drink anything and their blood sugar tanks you end up with a week long stay in the hospital. Plus every time he was sick he lost the tiny bit if weight that we had spent months trying to put on.
4. Many kids with RSS have g-tubes so we always knew it was a possibility. We were at our wits end with trying to get him to eat. He had no other GI reason for not eating (normal gastric emptying, his reflux had improved, normal upper and lower GI, etc.) It was a huge appetite issue and from talking to many RSS parents it was a general consensus that their appetites rarely pick up and basically the kids eventually get to an age where they realize they have to eat a certain amount at certain times and just do that vs. eating when hungry. We couldn't risk waiting for Nick to get to that point since he was so young and SO thin.
For us it wasn't a life or death decision but it was one where we knew it was inevitable, our GI who is very conservative was recommending it, our endo was recommending it and our nutritionist was also. I knew that since it was an appetite issue it wouldn't be a short term thing so we wanted to skip an NG all together and bypass the oral issues that can come with that. He did great recovering from his surgery- it's been a wonderful relief to have his tube in all honesty. He gets sick less often, the few times he has been sick since getting it have been SO much easier on everyone- I can just hydrate and keep his sugar up via his tube and not worry about forcing him to ingest anything orally. His blood sugar in general is more stable, his oral eating has actually improved because there is less stress about it, my mental health has improved b/c I am not constantly worried about feeding my child. Nicholas is lucky and so far has been able to be mainly tube fed overnight- he is on a continuous feed overnight (too add extra calories while he sleeps and to maintain his blood sugar overnight). He gets a few oz. bolus in the morning and 1 in the afternoon but the rest of the time he is disconnected from his pump and eating orally.
We aren't in a huge rush to get rid of the tube and I suspect that it will be a while before we do- mainly for blood sugar maintenance and until Nicholas is old enough to understand that he just has to eat sometimes. His actual surgery went well- we were in the hospital for maybe 2-3 days since it took a while before he would orally eat and be tube fed without vomiting but since coming home there haven't been many issues. Other than the first week there really hasn't been much pain associated with it- we've traveled, gone to the beach/pool with it, there are really minimal risks with a g-tube in our experience.