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Posted by on Jul. 29, 2007 at 6:36 PM
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Greetings all:  I am very glad that I found this group. My daughter, Nicole, is now 6 and had her trach inserted when she was 4.  Compared to your postings, she was older than most.

Tell me do any of you know if your children are candidates for decannulation in the near future?

I look forward to getting to know everyone.

by on Jul. 29, 2007 at 6:36 PM
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by on Jul. 29, 2007 at 9:43 PM

Hello, Vicky!  Welcome to the group!  I think you're right...most of the children I have read about have been younger than your daughter.  May I ask what led to her being trached at the age of 4?  I hope it wasn't an emergency placement...those are scary.  How is she doing now?  How are you doing?  My daughter, Lily, is actually going on Tuesday to attempt decannulation.  This is her second time...she failed the first.  She is 15 months old and was trached at 2 months.  She was born nearly 2 months early and suffers from low muscle tone, a floppy upper airway, and laringomalacia.  She has come a long way, though, and we couldn't be prouder of her.  Hope you enjoy the me anytime!

God bless you always,

This is Lily feeding herself cereal for the first time.

by on Jul. 29, 2007 at 10:26 PM
Hi Keri:  Nicole suffers from a neurological condition called Neruofibromatosis. Initially her doctor's thought Nicole had enlarged adenoids and then it became a narrow airway (windpipe).  They were going to do these surgeries on her and we were waiting for her to get older.  Her breathing became more laboured in the spring of 2005 & she contracted pneumonia.  From May 2005 untl August 2005 (when the tracheostomy occurred) we were in the hosptial quite a bit & I feared for her.  Her skin was  yellow and she was truly lethargic.

In the beginning of August we finally found someone who knew what he was doing & told us that she has vocal chord paralysis.  She was simply not breathing from the nose & mouth & could not, even though she tried.  So much to my dismay and unhappiness the trach happened.

Today we are living with it and dealing.  She is in school (she is going to go to 1st grade in Sept) and has been mainstreamed.  She is a socialable child, but the trach as well as her AFO's (orthotics due to low muscle tone) and back brace prevent her from doing a lot of things. 

I am hoping to decannulate her next summer.  We have all agreed that surgery will be performed, since we were told that unless a mircle happens (and I am not discounting that, yet) her chords will never work.

I hope your little one is decannulated successfuly.  Take care & if you want to talk...

by on Jul. 29, 2007 at 10:50 PM
as i read stories of all us strong women in here it helps me a lot to get thru everyday with my child. well also it seems like charlie is probably the youngest so far to have been trached. he was trached at 12 days old. only because he was born with a small jaw bone and was having lots of trouble breathing on his own. his jaw has gotten a tiny bit bigger but the problem now that he wont let any air up thru his mouth or nose. he has a passy but as soon as i try it at the first breath in he starts to panic. and i have to stop. so in his case not ready anytime soon for decannulation.
by Member on Jul. 30, 2007 at 9:45 PM
My daughter, MaKayla, had her trach placed at two months. She was born three months premature and her airway was floppy. She is now 17 mos. We are going to the doctor tomorrow to find out what he has to say about decannulation. I am so excited but yet worried. I know if he doesn't do it soon we will have to wait until spring/summer of next year but in my heart I feel we will get good news. She has done very well with the passy-meir valve, although it took a lot of patience. Thanks for sharing your story with us. I am glad things are going better for you and Nicole.

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