View Full Version : Hello
09-29-2008, 10:33 PM
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?
09-29-2008, 10:48 PM
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
09-29-2008, 10:51 PM
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!
09-29-2008, 10:52 PM
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
09-29-2008, 10:57 PM
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?
09-30-2008, 03:36 PM
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.
09-30-2008, 03:50 PM
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.
10-01-2008, 10:21 AM
Hi and welcome!
madelyn and rynns mom
10-01-2008, 09:49 PM
Welcome to the boards!!
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