I've read the responses to this topic with interest, but also with dread and anxiety, coupled with guilt. Tom has been tube fed since he was 8 months old, after months of anxiety, panic, weight loss, sleepless days and nights and the most extreme distraction techniques in feeding.
After 8 months of NG tube (as all the professionals expected him to start eating) and daily feeding therapy, we finally got a G tube. It was a tough decision, but I loved the G tube as soon as we got it, and I tend to be a big advocate of gastrostomies as they interfere far less with oral eating than the NG.
Tom is seven years old.
He eats a little, and is more adventurous with food than ever before, but he isn't able to eat enough to keep him going - far less than one meal a day.
Not only that, but he still only tolerates about 150cals at a time - 200 in a good period. Which means that not only does he have five bolus feeds in the daytime, but he is pump fed overnight.
I've tried removing the day feeds - after around five days, he's not eating anything at all and getting listless. I've tried removing night feeds - same problem. I've even gone as far as removing all tube feeds for around two weeks. He picks at little bits of food, but by the end of the two weeks, he had visibly lost weight, was very pale, and eating less and less. More worryingly, he wasn't even drinking. Back on the tube we went.
I make Tom's feed - from real food, blended smooth enough to go through the tube, even through the pump. Since I've done this (he was 3), he only vomits irregularly instead of daily, and he's pretty healthy.
I wanted to post this, because it occurred to me that there might be a mum or dad reading all this and wondering, "why can't I do this for my baby?". I still find myself wondering.
But at the end of the day, Tom now knows about his tube. He doesn't like having to tube feed himself (yes, he does his own bolus feeds), but he feels so sick when he's eating that that isn't an alternative for him. We are doing the best we can, and the tube is keeping my little man healthy. Deep down, I believe that the tube has kept him alive. For that, I love the tube!
After 8 months of NG tube (as all the professionals expected him to start eating) and daily feeding therapy, we finally got a G tube. It was a tough decision, but I loved the G tube as soon as we got it, and I tend to be a big advocate of gastrostomies as they interfere far less with oral eating than the NG.
Tom is seven years old.
He eats a little, and is more adventurous with food than ever before, but he isn't able to eat enough to keep him going - far less than one meal a day.
Not only that, but he still only tolerates about 150cals at a time - 200 in a good period. Which means that not only does he have five bolus feeds in the daytime, but he is pump fed overnight.
I've tried removing the day feeds - after around five days, he's not eating anything at all and getting listless. I've tried removing night feeds - same problem. I've even gone as far as removing all tube feeds for around two weeks. He picks at little bits of food, but by the end of the two weeks, he had visibly lost weight, was very pale, and eating less and less. More worryingly, he wasn't even drinking. Back on the tube we went.
I make Tom's feed - from real food, blended smooth enough to go through the tube, even through the pump. Since I've done this (he was 3), he only vomits irregularly instead of daily, and he's pretty healthy.
I wanted to post this, because it occurred to me that there might be a mum or dad reading all this and wondering, "why can't I do this for my baby?". I still find myself wondering.
But at the end of the day, Tom now knows about his tube. He doesn't like having to tube feed himself (yes, he does his own bolus feeds), but he feels so sick when he's eating that that isn't an alternative for him. We are doing the best we can, and the tube is keeping my little man healthy. Deep down, I believe that the tube has kept him alive. For that, I love the tube!
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