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Feeding Tube PIOG

Posted by on Apr. 19, 2010 at 11:30 PM
  • 14 Replies

So a couple of you are aware, but I thought I'd share with everyone. Aubrie went for her OPM (swallow study) today, and they found that everything she swallows goes into her airways, which is what has caused her infections, but it also is what makes her choke and gag. So they wouldnt let her eat from 9 or 10am (she had to be hungry for the study) until 6:30 when they put a feeding tube in. She has to have it until she grows out of it, or if they find something surgical in June when they do the scope to see if it is Lyrngeal Cleft. Tomorrow I have to put it in her nose and take it out and replace it. I will have to do this once a week or more depending on if she pulls it out. I am oddly enough okay. I cried for like 10 minutes then I was fine. I am more in the mode of, okay let's deal with this so she gets better. The drs are convinced she will grow out of this (but there is a possibility she wont) and her lungs will be stronger because nothing is going in them! So she'll be healthier over all. I will have to feed her formula through the feeding tube and thats all she can have. I'm really sad though that my baby can't have cake on her first birthday :( I feel terrible that I am caught up on that. And I gave her her last bottle ever earlier today :(

by on Apr. 19, 2010 at 11:30 PM
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Replies (1-10):
Tranla
by Elisabeth on Apr. 19, 2010 at 11:35 PM

I'm so sorry you're going through this.

CafeMom Tickers
lundaylove
by on Apr. 20, 2010 at 12:02 AM

im sorry momma!! She'll get better and stronger and thats all that matters. glad you got answers!

Mama2ETA
by on Apr. 20, 2010 at 12:03 AM

Thank you ladies!

H79fordgirl
by on Apr. 20, 2010 at 8:53 AM

sorry you are going through this. I hope she outgrows it! Hopefully they taught you all about the tube at the hospital? It is possible for the formula to go into her lungs and cause infection too. So you have to be careful. I'm a nurse so that is what I think about when I read your post - teaching the right way for it to be done.

JADIEBUG
by on Apr. 20, 2010 at 8:57 AM

NG tubes are not bad. My son has a permanent g-tube in his belly (Mic-Key button). The birthday cake thing is sad and it really bothered me...But your baby's health is the most important thing. If you have any questions or concerns feel free to ask or PM me.

okhsmom
by on Apr. 20, 2010 at 9:38 AM


Quoting JADIEBUG:

NG tubes are not bad. My son has a permanent g-tube in his belly (Mic-Key button). The birthday cake thing is sad and it really bothered me...But your baby's health is the most important thing. If you have any questions or concerns feel free to ask or PM me.


Best to both of you mamas.  To the OP, your LO may well outgrow this once she becomes more aware, mobile, upright.  Also, there are corrective surgeries to help maintain a safer airway. 

To Jadiebug, Is your LO completely NPO?  My dd had a mickey for 12+ years.  She was NPO for five.  Eventually we were able to introduce some oral feeds.  She's had many, many airway and gut surgeries.  Just wanted to tell you I understand about missing things that we think of as milestones, like birthday cake.  Our kids take our cue and find new ways to celebrate as we introduce them. 

Good luck :)

JADIEBUG
by on Apr. 20, 2010 at 9:43 AM

No he is not completely NPO. We are in feeding therapies and he will eat 10-15% by mouth. His is more a oral aversion issue now. He got the g-tube due to Failure to thrive and reflux issues. He had it put in when he had a Nissen Fundoplication. Now the reflux is not a issue...It is a behavior/textural issue. But we are slowly making progress.

Quoting okhsmom:

Best to both of you mamas.  To the OP, your LO may well outgrow this once she becomes more aware, mobile, upright.  Also, there are corrective surgeries to help maintain a safer airway. 

To Jadiebug, Is your LO completely NPO?  My dd had a mickey for 12+ years.  She was NPO for five.  Eventually we were able to introduce some oral feeds.  She's had many, many airway and gut surgeries.  Just wanted to tell you I understand about missing things that we think of as milestones, like birthday cake.  Our kids take our cue and find new ways to celebrate as we introduce them. 

Good luck :)


Mama2ETA
by on Apr. 20, 2010 at 11:41 AM

This is what they are talking about possibly doing now. Both since she has reflux and the eating thing. Well they are going to take her to their other location (the bigger location) and move her scope up to see about the lyrngeal cleft. If it is that they will fix it and see if that helps, if it isnt the lyrngeal cleft they want to talk with us about the more permenent options (g-tube, nissen fundoplication) They already explained it all to me, but they obviously wanted to try the more non-invasive before the scope so if it is a fast surgical fix they can do it.

Quoting JADIEBUG:

No he is not completely NPO. We are in feeding therapies and he will eat 10-15% by mouth. His is more a oral aversion issue now. He got the g-tube due to Failure to thrive and reflux issues. He had it put in when he had a Nissen Fundoplication. Now the reflux is not a issue...It is a behavior/textural issue. But we are slowly making progress.


JADIEBUG
by on Apr. 20, 2010 at 11:44 AM

The Nissen saved my son's life. He started gaining great weight afterwards. The downside is they can't vomit or burp. My son is just now able to burp...He is 27 months old and had the surgery under 1 year old. They can only dry heave when they need to vomit but they make Meds to help ease that issue when they get sick.

Quoting Mama2ETA:

This is what they are talking about possibly doing now. Both since she has reflux and the eating thing. Well they are going to take her to their other location (the bigger location) and move her scope up to see about the lyrngeal cleft. If it is that they will fix it and see if that helps, if it isnt the lyrngeal cleft they want to talk with us about the more permenent options (g-tube, nissen fundoplication) They already explained it all to me, but they obviously wanted to try the more non-invasive before the scope so if it is a fast surgical fix they can do it.

Quoting JADIEBUG:

No he is not completely NPO. We are in feeding therapies and he will eat 10-15% by mouth. His is more a oral aversion issue now. He got the g-tube due to Failure to thrive and reflux issues. He had it put in when he had a Nissen Fundoplication. Now the reflux is not a issue...It is a behavior/textural issue. But we are slowly making progress.



misunderstood1
by on Apr. 20, 2010 at 11:45 AM

as long as you stay strong she will be strong. there is nothing wrong with crying and being upset but do it away from her so she can feed off your positive energy! i am so sorry you are going through this, I could never imagine that. thinking of you and your little girl!

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