As for the formula for the feeding it depends on your insurance type. Eric is on medicad through ssi and his is paid for. It is not cheap. I beleive his formula is between 200 and 300 dollars. Depends on the type of formula and how much he takes. Eric is on Nutren 2.0 and takes 3 cans a night.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
What about G tubes?
- Thread starter anonymous
- Start date
littledebbie
New member
I don't want to start anything but since this is posted in the
adult section I'm going to feel free to go ahead and say
this...this really bothers me. I understand the entire
"preventative, proactive" stance but this is a pretty
major thing that I think it's easy to make sound trivial and no one
mentions the mental impact of all these invasive surgeries and
becoming somewhat "bionic". I don't know maybe I'm
alone with not liking to have a bunch of artificial gizmos. I
know when they are necessary they are necessary that's not my point
it's just that when it's more a matter of "well, it MIGHT help
and it COULD be easier" that just makes my hair stand on end.
adult section I'm going to feel free to go ahead and say
this...this really bothers me. I understand the entire
"preventative, proactive" stance but this is a pretty
major thing that I think it's easy to make sound trivial and no one
mentions the mental impact of all these invasive surgeries and
becoming somewhat "bionic". I don't know maybe I'm
alone with not liking to have a bunch of artificial gizmos. I
know when they are necessary they are necessary that's not my point
it's just that when it's more a matter of "well, it MIGHT help
and it COULD be easier" that just makes my hair stand on end.
Emily65Roses
New member
Debbie has a point. I haven't read the whole thread, and when a G tube is necessary, it's necessary. Hell, do it.
But doing a G tube as a proactive, as a preventative, is further than I'd go. There's a difference between proactive swallowing pills or inhaling medicine... and proactive cutting you open, and sewing foreign objects into your flesh.
Mind you I'm not talking to anyone in particular, I'm just backing up what Debbie said so people don't think she's a lone nut who's the only one that thinks things like that.
But doing a G tube as a proactive, as a preventative, is further than I'd go. There's a difference between proactive swallowing pills or inhaling medicine... and proactive cutting you open, and sewing foreign objects into your flesh.
Mind you I'm not talking to anyone in particular, I'm just backing up what Debbie said so people don't think she's a lone nut who's the only one that thinks things like that.
I just wanted to say one more thing. Like I said before we thought long and hard before going through with the feeding tube. We tried everything as should you. My son was listed as failure to thrive at the time. I believe he was like in the teens to low 20 percenticile for his weight and height . He struggled to stay between 55 and 60 lbs not much for a 12 year old and if he got sick he would easily lose 10 lbs in a weeks time. Not a good thing so this decison was based on medical need. Don't do it if their are still options.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>littledebbie</b></i>
no one
mentions the mental impact of all these invasive surgeries and
becoming somewhat "bionic".
</end quote></div>
Debbie, you always have a way with words! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I can tell you that both my kids hate their g-tubes!!! They hate the fact that they are there at all, they hate the reminder that they failed to gain weight on their own, they hate the fact that they have stuff they have to hide from people, they hate that they leak, they hate that they are hooked up at night, they hate that it makes them different! The tubes have made a big mental impact on them.
<b>BUT</b> They know they are working. They are gaining weight and they weren't before. They are healthier with tubes than without. They can do more stuff because they are healthier. They are growing taller. The g-tubes are allowing them to have a more "normal" life. And THAT has made an even bigger mental impact ont hem. That is a good reason to get g-tubes.
Yes, its a trade-off.
no one
mentions the mental impact of all these invasive surgeries and
becoming somewhat "bionic".
</end quote></div>
Debbie, you always have a way with words! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I can tell you that both my kids hate their g-tubes!!! They hate the fact that they are there at all, they hate the reminder that they failed to gain weight on their own, they hate the fact that they have stuff they have to hide from people, they hate that they leak, they hate that they are hooked up at night, they hate that it makes them different! The tubes have made a big mental impact on them.
<b>BUT</b> They know they are working. They are gaining weight and they weren't before. They are healthier with tubes than without. They can do more stuff because they are healthier. They are growing taller. The g-tubes are allowing them to have a more "normal" life. And THAT has made an even bigger mental impact ont hem. That is a good reason to get g-tubes.
Yes, its a trade-off.
damiensmom
New member
This has been a constant issue for My sons Doc and my self. I will try everything in my power to keep from Damien having a feeding tube. Now he is in the 10th percintile and was down to the 5th.IM sorry I cant remember how old you said your child was but there are so many things that are just trade offs, one problem for another. And the physcological aspects for not only him but you. I had read everything I could on feeding tubes and the physcological concerns the side affects and in my case with Damien being so young the loss of mother to infant/child bonding. But the brass tacts were pulmonary function. And only hes Fev.5 (forced expitory volume) would have made made me reconsider had they been low. How is your childs pulmonary function. And the ordeals about enzymes are what? I personally can see how hard it is to keep again not only your theres but our issues around food from getting unhealthy and self defeating. I am having to admitt that with all the pressure i put my self under and all i feel is put on me, I can transfer to to Damien. And I think of all that surrounds hes care is oral almost, meds, treatment and reflux we have all but aliviated that, coughing aand gaging on mucos and the dreaded adeks how can they not have issues then ours on top of it. Kids with cf have to deal with issues of all kinds to trade one issue for another is well at this point your decision but there has been a envasive and pysically and mentally unreversable signs and scars . And for a catch 22.In most cases. Pulmonary function related to B.M.I, cant be denied and especially in the young. Still its a your call and I may not make the same decision you would but I will support your decision and if nothing else to say I know things SUCK somtimes. And I hope what ever it is you are content in that decision. So sorry I cant type or spell and this took me about 30 to 40 minutes to type. It is funny how I never touched a computor and now that I spend alot of time at home I give it a shot. It is Hot Hot HOT in this desert and till it cools Boots and I (Damien) are pretty much homebodies. God Bless.