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[quote=Anonymous][quote=Anonymous]Not OP,

9:26, how does the feeding tube work at night?  Your child eats normal food during the day, then the feeding tube at night?  Does it make him full or sick?  How noticeable is the tube during school?  Uncomfortable?

I think this is something we now need to consider.  My DS is almost 14 and weights less than 80 lbs and is not growing.

We have another apt with a top pediatric endocrinologist later this month.[/quote]

9:26 here - sorry you're in this position.  Sorry OP and others on this thread are in this position as well. I hope the following is helpful.

We do the tube feeds overnight so he can just eat regularly during the day. It was/is important to us that he continue to enjoy meals and participate in everything meal and food related in a normal way. In my son's case, as I said, he isn't a picky eater. He actually prides himself on being a fairly adventurous eater and likes to cook. He just somehow can't manage enough quantity. (He feels queasy a lot after eating, and is rarely actually hungry. No medical reason we could ever elucidate despite many many specialists.)   Anyway, we really don't want to create an unhealthy dynamic around meals and food where there wasn't one. Thus our decision to use it at night, although we could certainly use it anytime if we need or want to.

So how it works .....we have a pump and feeding bags that are provided by insurance. We fill the bag with however much ensure or pediasure and set the pump at a slow rate. So for example, we are currently doing 4 cans of 1.5 cal pediasure over 7 hours. That's about 1400 calories. We just fill the bag, hang it onto the bed frame, run it through pump, attach the tube, turn it on. It's pretty simple. (You can get a whole hospital set up with an IV pole but we really wanted this to NOT be what his life is about, so we have the bare minimum going.)  There's sort of a learning curve with how to run the tubing so that it doesn't get occluded (like if he rolls over on it), because the pump alarms and wakes everyone. Pretty frustrating, but over time we've worked out a method of safety pinning it that works 99% of the time. It has an alarm to tell you when it's finished, but we disabled that, so it finishes quietly while he's sleeping. He wakes up, disconnects it, and goes.

Initially, it is definitely hard. It's a surgery, they put a hole in your stomach, and it hurts. I don't want to minimize this. It was hard on me, too. I let them put a hole in my perfect baby! I had a lot of bad thoughts about my terrible parenting and how we got to that point.

Afterward, I was actually amazed at how fast he recovered. He was very sore for 2-3 days, then mildly sore for maybe a week. He was depressed at the situation. (Although he did agree to it and recognized that we needed to do something.)  He was at school a week later and participating in PE.  Initially he had a longer PEG tube (something about these healing better), then 6 weeks in they replaced it with the button. The PEG is more annoying because it flops around, but it wasn't terrible.  The first month or so we had that stupid alarm going off all the time, we'd fail to connect things well and there'd be a leak, etc.  At this point though, it's pretty easy and low maintenance.  The button g-tube has to be changed every few months; you just deflate the balloon inside and slide it out and insert a new one, and inflate its balloon. he was nervous about this the first time, but since then has done it himself twice. We've mastered the tubing arrangement and the alarm rarely goes off, etc. Supplies are delivered to my door once a month.

The tube isn't noticeable under a shirt. At first you could kind of see the PEG, especially because he was SO skinny, but only if really looking. The button not really at all. For a while he kept his shirt on under his PE shirt, but he decided he was getting too hot and now changes in PE. Kids have seen it and there were a couple of questions but no negative commentary. He swims with it. We cover it with a tegaderm or he wears a swim shirt, or not, depending on where we are. (Mostly to avoid comments, frankly, because any water you can swim in is ok for the tube.)  He doesn't feel full when we do the slow rate overnight. He's not hungry for breakfast, but he never was really a breakfast eater. (And now we can afford to let that go!) If we do a whole can right at once, which we have done once or twice experimentally to add calories, he's full, but only in the same way you would be if you just drank it. You could do it fast enough to get sick, but you could do that by drinking it, too. Manageable by controlling the rate. He can tell if the fluid is super cold but otherwise doesn't notice he says. The tube itself doesn't bother him. It's all healed with perfect looking skin around it. Some people have problems around them, but he hasn't.

It is a big decision, and I wish we weren't in that situation in the first place, but we don't regret it. Not only is he growing, he's more even tempered, more focused, more rational, less anxious, and happier in general.  He'll never be a big guy, and I still don't know what happens in adulthood, but we're on a much better trajectory than we were. 
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