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#1
02-01-2008, 09:12 PM
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Hello from Florida
Hi everyone. I have been looking around the site for several months
but have recently joined. I have a 3 year old son named Christopher who has Jeunes Syndrome. He has been trached sinced 6 months old. He has had 2 lateral expansion surgeries & has been off the vent for 10 months. He is off oxygen most of the day & we are starting to wean at night. We are hoping for a decannulation later this year. I am so glad I found this site, it is full of great information. 
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#2
02-02-2008, 07:37 AM
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Just wanted to welcome you
 I joined a short while ago my self, there are allot of great people here. enjoy 
__________________
Hanna mom to Villi 06/92.Svana 11/99. Álfrún 11/05  Svana Neurofibromatosis (NF1) Trached at 15 mo, ADHD, Hearing impaired, low muscle tone, tube fed only and much more.......
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#3
02-02-2008, 11:16 AM
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Hi and welcome. There are other parents of children with Jeune's on here, so you'll have a lot to talk about. Glad you found us - this is a great place for support and advice.
Julie
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  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#4
02-02-2008, 02:50 PM
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Welcome to you and Christopher. After 3 years, I'm sure you have a lot to share. Karen
__________________
Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel. 
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#5
02-02-2008, 05:12 PM
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Hi and welcome to the board. I am glad you have found it helpful so far... I think you will find everyone here a wonderful bunch and they have a wealth of knowledge as there is always person has BTDT to answer your questions.
I hope Christopher is able to be decanned this year. We are also hoping for that as well. Was Christoper trached and vented at birth? Ayden wasn't trached until he was about 4 mo old, but was on and off the vent and oxygen since birth. Once he received his trach, he was on a vent and oxygen, even when he came home from the hospital. We too have weened off the vent - only on 7 hrs at night, and still have oxygen. Did your Drs say that he had to be off o2 before being decanned? I don't believe that is a criteria with our Dr, although we have never discussed. Welcome again!!!
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Dawn  former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 -  Follow decan at: http://sleepy-dogs.blogspot.com/
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#6
02-02-2008, 06:55 PM
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Thank you for the wonderful welcome.
Christopher was trached & vented at 6 months. He has been on o2 since birth. His lungs do not have enough room to expand fully & at 6 months his co2 went sky high. The vent was to help him blow this off. I got the impression the Dr. wanted him to be off O2 before being decanned. I'm not sure that will be possible but he could always go back on nasal cannula as needed. Karol
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#7
02-02-2008, 08:42 PM
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Hello Karol- Welcome to the board!
__________________
Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002). Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo!  The Birthday Boys by TwinTransfusion, on Flickr
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