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#1
09-29-2008, 10:33 PM
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Hello
Hello, It is so nice to read all of your posts. It has really helped us. We have a 5 yo little girl who was born with Down Syndrome, then got meningitis. This resulted in many new challenges, including a trach. She has had the trach 3 1/2 years now and has done really well but she is suddenly having some problems. She can no longer wear her passey muir, is on bipap and oxygen. The doctors have started talking about a vent. We are a little scared. No one knows why she has changed. Any ideas?
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#2
09-29-2008, 10:48 PM
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Could she be micro-aspirating? Just a guess on my part. Welcome to you and your family. Can't wait to hear more about you. 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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#3
09-29-2008, 10:51 PM
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Hi and welcome to the board! I am sorry your daughter is having issues now. When was the last time she had a bronch? Maybe she has a granuloma that is impeding on the airway. Ayden did in a matter of 6 months between bronchs.
Just a thought... hopefully a vent is not in the future!
__________________
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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#4
09-29-2008, 10:52 PM
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what is microaspirating? I don't mean to sound dumb but we got Janaan after the trach was placed. We got a bit of training from her bio mom so there is a lot I think that we missed. I think the doctors are so used to us they just assume we know things we don't
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#5
09-29-2008, 10:57 PM
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we see ENT next week. The pulmonologist has been managing her trach for about a year and what a healthy year it has been! I never thought of the trach obstructing because the changes are so easy but you are right. I hope that is it. Do you know how fixable a granuloma would be?
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#6
09-30-2008, 03:36 PM
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Hi and welcome. A granuloma can easily be removed during a routine bronch. I'm sorry she is having issues right now. Has she been sick recently? Good luck with ent.
Julie x
__________________
  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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#7
09-30-2008, 03:50 PM
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Hi and welcome to the board. I have a grandaughter who is 4 and half years old who too was born with Down snydrome( here we call it the ultimate love snydrome) She too has a trach and feeding tube . she spent 4 and half months in the nicu more than 160 miles away. we went daily to be with her. although we do have some home health nursing i am her primary care giver so my daughter can work and pay for the insurance. I would love to get to know you guys and help you out anyway that i can. i cant wait to here all about you guys and your sweet girl.
__________________
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#9
10-01-2008, 09:49 PM
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Welcome to the boards!!
Kris 
__________________
Kris 3/24-26wk twin girls born 7/01 at 1lb15 & 1lb13. Rynn-trach. malacia, Grade 1 SGS, reflux, asthma, autism(high funct. Asperger's) & epilepsy. Madelyn-severe trach. malacia, Grade 3 SGS(Trached 10/21/01 to 11/20/11 DECANNED) ,PVL,BPD,CP,submucousal cleft,reflux, G-button(12/01), nissen X2, off vent '03.Two of the most Perfect Princesses!  !!
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