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Monday, September 12, 2011

I'm Not a Fan...

So Carter has had his G tube now for over a week, and I still don't like it.  Yes, I am more comfortable with it and how it works, but I don't like it.  I kept thinking that it would be such a great thing, and yes it is in ways, but it is so so gross.  I know that sounds immature, especially because I'm the mom, but it really is.  Carter has been getting a lot of gas and cries more, so we have to do what's called venting.  Basically you put a big syringe in his tube, unclamp, and then let the air bubbles come out.  You slowly pull back on the plunger to pull it out.  You do get some food/water with it (gross to me!) but you are basically trying to get out the air bubbles.  It's frustrating because I feel like how is it possible that he gets so much air during a feed?  I mean, it's going straight in his stomach right?  We also make sure the syringes are brimming with the formula before inserting, so I'm confused.  The nurse also made it sound like it shouldn't be that bad.  I guess I might need to start slowing his feeds down, or use the pump and let it do the work.

A bolus feed is what we do during the day, and it's where we control the flow and slowly push in the PediaSure.  We do 5 ounces in like 10 minutes, but usually he seems fine with it.  It's a little later that he'll cry and we get a lot of gas out.  I guess until his stomach stretches more we'll have to slow it down.  I feel bad for him because he is in so much pain sometimes.  It's hard to predict because some feeds he never has a problem, and others he does.  We do the same amount each time, and about the same time too.  Oh well.  I guess it's a learning progress.  My other issue is that the PediaSure smells so bad; I don't know why but the smell drives me up the wall.  So when I have to feed him, it's kind of hard for me.  We've tried the different flavors too (even though he can't taste it) and it's still gross to me.  Cleaning the syringes and stuff can be gross as well, but I'm sure eventually I'll get used to it.  We had a night where one of the ports opened up and the formula spilled out all over his bedding and clothes.  It was so gross, and I felt so bad for Carter that he was sleeping in that.  We had no idea it had spilled out.  The pump only alerts you if he has pulled something out, not if it isn't actually going anywhere.

We have been weighing Carter and he seems to be gaining weight, and we have noticed he is more alert and is more into touching things and grabbing.  It's a plus, but on the downside he gets super frustrated now with not being able to do everything he wants to.  If we take his toy away to take him somewhere, or move him he gets super mad.  It's cute, but interesting.  I know this G Tube is a good thing, I just wish he could go back to eating "normally".  I wonder if he knows we are feeding him, it's just a strange thing.  I use chap stick to help stimulate his mouth as well as brushing his teeth to keep it moist; we also feed him in the highchair so he can associate it with feedings.  I have tried feeding him some yogurt and pudding, but he isn't hungry and seems a little weirded out by it.  I'm worried he will lose what capabilities he had; I'm anxious to meet with his feeding specialist again to go over what we can do to keep working on his skills.  For those that have used a G Tube or been around one, this probably all makes more sense.  I guess I am a little resentful that we had to take this route, but I'm also thankful we have the technology to still feed him and get him what he needs.  I'm hoping with some more training, our parents will soon be comfortable enough that we can have a break again one day.

2 comments:

  1. Sounds like you have a lot to get used to right now. I have heard many families talk about how frustrating the gtube is initially. Most people get used to it and some people seem to love the gtube. When Zoe is on NG tube feedings, we do find it helpful to feed her in the highchair and to feed her oral foods at the same time. Most of the time, Zoe is receptive to this. Not sure how hungry Carter is depending on how much you are feeding him through the tube. I know some kids are getting so much through the tube they lose interest in eating since they never feel hungry. I don't know what your long term plans are for Carter but with Zoe when she is on tube feeding we always give her bolus feeds instead of continuous feeds. And we give her feeds during normal meal times and rarely run feeds over night. That way her stomach is used to normal eating patterns and when she comes off the tube feedings, she is hungry at normal meal times. Not sure if this would work for Carter depending on what the long term plan is. We also never found the chap sticks helped much. The best way to encourage Zoe to eat with her mouth is to have her eat with her mouth. But that is just Zoe, perhaps they will help with Carter.

    Good luck as you all try to figure this out. I am glad to hear Carter is making some developmental gains-that is a good sign.

    I will keep you all in my thoughts.

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  2. I forgot to mention- I hate the smell of Pediasure too! I feel your pain!

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