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Pediatric Tracheostomies For parents and caregivers of children with tracheostomies.  Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support.

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  #1  
Old 09-27-2005, 12:36 PM
Claysmom Claysmom is offline
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My name is Kayce(we live in IN) and I have been a Lurker for a while. Â*My son Clayton is 2 1/2 years old and was trached at 5 months due to severe BPD. Clayton has a g-button. He was born 10 weeks premature and ended up with pnemonia in the NICU. He spent his first year of life in the hospital. Clayton is also profoundly deaf but received the Cochlear Implant in July of this Year and is doing well. We are off the vent for 6 hours during the day and he is still vent dependent at night but we are hoping by the end of the year to be vent free during the day.

I just wanted to get you all know that even though I never posted, when I needed advise I would read your post and they were and still are extremely helpful. Â*Now maybe it is my turn to offer someone the help that I received.

Sincerely

Kayce
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  #2  
Old 09-27-2005, 12:47 PM
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babyhugger babyhugger is offline
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Hi Kayce,

Glad your here!

Dawna
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Dawna, Mom to Tristan 6 yrs, former 22wk preemie with trach (decanned 6/20/07!!), Josh 25, Jenna 21, Gracie 14, and Jon 11.
Photography website: http://pricelessmemoriesphoto.com/

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  #3  
Old 09-27-2005, 12:54 PM
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JWorthington JWorthington is offline
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Hello Kayce, and welcome to the board. This board has been a great support for me and a source of good advice. It's nice to know your not alone.

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  
Old 09-27-2005, 12:58 PM
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sandra sandra is offline
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Hi Kayce,

Clayton sounds a lot like my Brian and about the same age. Welcome and I look forward to getting to know you and Clayton.

Sandra
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Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007.


B & C are surviving triplets. Brooke survived for 1 month.
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  #5  
Old 09-27-2005, 01:33 PM
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Evy Evy is offline
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Hi Kayce,

Glad you posted (you'll be a pro at it before you know it). Clayton sounds very much like my grandson Jordan. He and his twin are 26 months old now and were born 11 weeks premature so BPD is his major problem too. Jordan is also weaning from the vent. He's on just 7 hours at night now. Being off the vent during the day was a very freeing experience. Even though equipment still goes everywhere with him, it's so much easier not being hooked up. We want him to be off the vent totally but at the same time my daughter is a little nervous too. Are you feeling the same way?

Keep posting. I'm sure you have a lot to offer everyone here.

Evy
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Grandma to Jordan and Cody - born at 29 wks - Jordan was decannulated April 17, 2006!
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Old 09-27-2005, 03:03 PM
hcs_mom hcs_mom is offline
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Welcome! You'll find great friends and advice here. My daughter, Hannah, was trached for subglottic stenosis. She had surgery in April and we are anxiously awaiting decannulation. She was a former 25-wkr.

Glad you found us! I look forward to getting to know you and Clayton.

Jennie
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Mommy to Hannah 8/2/03: fmr 25-weeker, trached 11/03 for subglottic stenosis, LTP 4/05, CTR 4/06, LTP 1/07. Decannulated 1/19/2007!! Gearing up for reconstruction #4; Also Mom to Brianna, 2/22/98: fmr 24-weeker, a little dramaqueen. My amazing gifts.
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  #7  
Old 09-27-2005, 03:13 PM
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Jacob's Mom Jacob's Mom is offline
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As you probably already know, this is a wonderful group! I'm glad you decided to join in.

I look forward to getting to know more about you and your little one!!
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Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube.

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  #8  
Old 09-27-2005, 03:44 PM
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indiemum indiemum is offline
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Welcome Kayce,

It sounds like with that much experience, we could pick your brain.

Kelly
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Kelly, mother of , Indira 6 (trach and g-tube)[/color] [/color]and Max 4. [/color]When there is no you are the reason I bound out of bed. Thank-you for giving me life!


See Indie- http://www.tracheostomy.com/trachkids/kids12.htm
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Old 09-27-2005, 05:10 PM
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T-bone T-bone is offline
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Hi Kayce and Clayton, Welcome to our group. You will find a lot of information, advice, support and lots of love on this board.
Teresa
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Thyroid Disorders Forums
Last edited by T-bone : 03-25-2011 at 04:38 AM.
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  #10  
Old 09-27-2005, 06:50 PM
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twintotwin twintotwin is offline
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Welcome to the board Kayce! Thanks for introducing yourself!
My twins have severe BPD as well. Though it's not a club you *want* to join, as least you know we are always here.

~Kerry
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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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