Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Current Events & Hot Topics Current Events & Hot Topics

Feeding Tube Awareness Week

Posted by on Feb. 11, 2013 at 2:07 AM
  • 9 Replies

I figure this is a current even and sometimes even a hot topic ;) This week is Feeding Tube Awareness week and my son has a feeding tube known as a gtube. He is fed through it continuously 24hours a day and gets 100% of his nutrition through it :) Feeding tubes save many lives and here is a video of many of them and below is a link where you can find more info. Have questions for me, just ask :) 


For more info visit: http://www.feedingtubeawareness.org/

by on Feb. 11, 2013 at 2:07 AM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-9):
tooptimistic
by Kelly on Feb. 11, 2013 at 8:10 AM
1 mom liked this

My daughter is a tubie!!  She is a congenital diaphragmatic hernia survivor.  She was tube freed form the beginning.  No she is now four and has a hard time gaining weight.  She eats during the day and is tube fed at night to help her gain weight.    We love her Mic-Key!!

desertlvn
by Silver Member on Feb. 11, 2013 at 8:33 AM

Why is your son tube fed?

Mipsy
by Bronze Member on Feb. 11, 2013 at 1:32 PM

I never knew that about you guys! That is awesome! Well, ok, you get how I mean awesome, yeah? LOL! I mean, tube feeding isn't  my first choice or anyone's, but meeting other tubies is always great! We have the AMT Mini One ;) 

Quoting tooptimistic:

My daughter is a tubie!!  She is a congenital diaphragmatic hernia survivor.  She was tube freed form the beginning.  No shei si four and has a hard time gaining weight.  she eats during the day and is tube fed at night to help her gain weight.    We love her Mic-Key!!


Mipsy
by Bronze Member on Feb. 11, 2013 at 1:35 PM
1 mom liked this

He has a disease called gastroparesis which is basically a paralysis of the stomach. A normal persons stomach should empty it's contents in 4 hours or less, with my son, at 2 hours he only empties around 12%. He stopped eating and more importantly, stopped drinking and became chronically dehydrated so they put in a feeding tube. He is fed continuously 24 hours a day and is fed a little under 2oz over the course of an hour all day long. We found that if we stopped and started his feeds, his stomach would shut down and stop working, but if we keep feeding him continuously, his stomach remembers to work. :)

Quoting desertlvn:

Why is your son tube fed?


tooptimistic
by Kelly on Feb. 11, 2013 at 1:41 PM

We tried the mini, but the balloons kept losing water and they are a pain in the butt to change if they fall out!!

Do you use a joey pump that fits in a backpack?


Quoting Mipsy:

I never knew that about you guys! That is awesome! Well, ok, you get how I mean awesome, yeah? LOL! I mean, tube feeding isn't  my first choice or anyone's, but meeting other tubies is always great! We have the AMT Mini One ;) 

Quoting tooptimistic:

My daughter is a tubie!!  She is a congenital diaphragmatic hernia survivor.  She was tube freed form the beginning.  No shei si four and has a hard time gaining weight.  she eats during the day and is tube fed at night to help her gain weight.    We love her Mic-Key!!




Mipsy
by Bronze Member on Feb. 11, 2013 at 1:47 PM

We haven't tried a mic-key but we did have 2 balloons pop on us. One was our fault, it got ripped out (ouch) and the other one, it sprung a slow leak and then my son was standing there and all of a sudden he lifted his short and out fell the tube, yuck! LOL! But this tube is doing fine now :) 

We had the Joey, but it was too heavy on his back and it constantly alarmed. So we have a zevex infinity now. So much smaller and it's made to be portable :) I have a before and after pic of him wearing the 2 different bags somewhere 

Quoting tooptimistic:

We tried the mini, but the balloons kept losing water and they are a pain in the butt to change if they fall out!!

Do you use a joey pump that fits in a backpack?


Quoting Mipsy:

I never knew that about you guys! That is awesome! Well, ok, you get how I mean awesome, yeah? LOL! I mean, tube feeding isn't  my first choice or anyone's, but meeting other tubies is always great! We have the AMT Mini One ;) 

Quoting tooptimistic:

My daughter is a tubie!!  She is a congenital diaphragmatic hernia survivor.  She was tube freed form the beginning.  No shei si four and has a hard time gaining weight.  she eats during the day and is tube fed at night to help her gain weight.    We love her Mic-Key!!





MsDenuninani
by Silver Member on Feb. 11, 2013 at 2:03 PM

My son is on the NG tube -- the muscles in his throat aren't covering his windpipe and he's aspirating fluids.  We're hoping the problem will correct itself with speech therapy; there doesn't seem to be an underlying reason or cause.

Thanks for posting!

(Added later -- if you had a similar experience, please share.  Particularly if you found you did end up transitiong to the G-tube.  I'm hoping that he will no longer need the tube in 3-6 months, but I also don't want to kid myself or have unrealistic expectations.)

TruthSeeker.
by Milami on Feb. 11, 2013 at 5:31 PM

 Bump!

Mipsy
by Bronze Member on Feb. 13, 2013 at 3:51 PM

*hugs* I am sorry, I have been meaning to reply to you. It has been a sucky week for us. Is your son able to drink thickened fluids? Not ideal, but it can help to strengthen those muscles, as long as it is safe enough and he doesn't aspirate on thickened fluids. My son used to aspirate on fluids so we had to thicken his fluids to nectar thick and honey thick at one time too. We have a gtube because of GI diseases though, not because of teh aspiration. How old is your son? 

And I hated the NG tube, totally hated it!  So I say, if they end up wanting to go to the gtube route, embrace it. It seriously makes life so much easier. It's more comfortable too rather than having that darn thing in their nose and tape on their face. 
uninani:


My son is on the NG tube -- the muscles in his throat aren't covering his windpipe and he's aspirating fluids.  We're hoping the problem will correct itself with speech therapy; there doesn't seem to be an underlying reason or cause.

Thanks for posting!

(Added later -- if you had a similar experience, please share.  Particularly if you found you did end up transitiong to the G-tube.  I'm hoping that he will no longer need the tube in 3-6 months, but I also don't want to kid myself or have unrealistic expectations.)


Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

close Join now to connect to
other members!
Connect with Facebook or Sign Up Using Email

Already Joined? LOG IN