[tri-med] Re: Aspirating

 I'm a camp nurse this summer at a camp for kids and adults with disabilities.  
I had  a beautiful girl (13yo) with CHARGE syndrome last week.  She had such 
terrible reflux that she had a g-tube (mic-key) placed as an infant.  She 
recieves all her nutrition through the g-tube (Nutramagen and her mom's 
specially made formula), but she likes to lick things for enjoyment (fruit, 
veggies, bread, sometimes sweets)
 
Ann Johansson
Future Neonatal Nurse Practitioner
Indiana Wesleyan University
 
 
-----Original Message-----
From: baptistas@xxxxxxxxxxxxx
To: tri-med@xxxxxxxxxxxxx
Sent: Fri, 14 Jul 2006 5:29 PM
Subject: [tri-med] Aspirating

Our daughter Zoe(full T18)  is 5 months old today.  In March she had a Nissin 
and G-tube.  Since then we have not been feeding her by mouth because we had a 
doctor who told us it could be dangerous for her and that she might aspirate.  
We have been trying for months to get our doctor to give us a referral for a 
modified barium swallow test but she would not.  We have recently changed 
doctors and had the test done last week.  Both the doctor and the speech 
therapist who were there during the test told us that she swallowed well and 
that we could start trying to feed her by mouth.  Since it has been so long 
since she had a bottle this is proving to be a very hard task.  In talking with 
another mother of a T18 baby today she mentioned that a lot of trisomy babies 
die from aspiration pneumonia.  Now I am wondering if it is even worth trying 
to 
feed her by mouth.  What would you all suggest?  Do they really have a lot of 
trouble with aspiration and if so, would it be something we 
 would know ahead of time?  What do you all do with your children who have 
G-tubes, do you stop feeding them by mouth?  
I just want to say thanks to all of you out there who take the time to help us 
new mothers out.  You all are a blessing to me.  It is so comforting to know 
there are people out there who can help us.  

Blessings,  Sarah
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line
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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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