Hi, New to Board

[Debmomof2]

I have two boys ages 7 1/2 and 6 1/2 years old. Â*Both of them were born with severe tracheomalacia. Â*My 7 1/2 yr. old had a trach from age 6 months to 2 1/2 years of age. Â*He has been doing great since his decannulation. Â*My 6 1/2 yr. old is another story. Â*He got his trach at 4 weeks of age, have tried decannulation 3 times, and no sucsess. Â*He has had many broncs, about 2 a year so far. Â*I am confussed and frustrated with our Pulmogist and ENT doctors, who seem to have a different story each time they have a look at his airway. Â* Last Sept. they bronced him and said that his airway looked the best it's every looked, so they booked him into ICU to be decannulated. Â*Well, the first night he did great, his O2 sats were wonderful, the next day we went home. Â*The 2nd day, his breathing became a little more laboured, and we thought that he just needed to get adjusted to breathing without the trach, anyway on the 6th day I took him back to the hospital and they admitted him and did an emergency trach re-insertion.
They did another bronc on the 20th of Feb. 2002, and now they are saying that he still has traceomalacia at the trach site and that his vocal cords are not moving. Â* I am so frustrated now I don't know what to think. Â*It looks like he will have his trach for who knows how long. Â*The doctors sure don't. Â*Sorry that this is so long, Â*I guess I just needed to vent. Â*Does anyone else have the vocal cord problem and how did your doctors deal with it or correct it?

Deb mom of 2

[Michael's mom]

Hi, and welcome! This is a great site! I found the story of your 7 year old so inspiring! Your 6 year old - well, that's more the norm around here it seems http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/wink.gif It's really frustrating clawing your way to the top of that muddy mountain just to fall backwards, isn't it? I guess the only thing we can do is to keep heading towards the sun, try to see the growth from the rain, and keep moving so the earth doesn't swallow us up, huh? That's how I feel some days. I don't have any advice, just wanted you to know you're not alone out there! Sue

[Debmomof2]

Thank you everyone, who has replied to my post, It's nice to know that there are other families out there that know how you feel and can lend a sypathetic ear.

Teresa, I found your story very interesting. I have talked to my sons ENT about surgery in the vocal cord area. He seems to be very hesitant about doing anything. He said they could laser tiny bits from the cords to give more of an airway but says that it is risky, it could effect his speech and could cause him to aspirate. He just wants to wait and see if they will start working on there own, which could take years.
We don't even know for sure what has caused the cords to stop working, it must have been when he was intubated as a new born.
The arytenoidectomy you talked about, it sounds like your son has had good luck since this surgery? What are the chances of aspiration, since the vocal cord does help to protect the airway?
Deb mom of 2

[Debmomof2]

Thanks Scott Â*for your opinion. Â* Laser surgery was an option that the docs had suggested but they did say that there was a risk in doing it, so right now we are actually doing absolutley nothing. Â* And we would be getting a second opinion on that before going ahead if it is brought up again.
Right now with vocal cord probelms and the malacia we are stuck, as we can't do anything until one or the other corrects itself. Â*

Debmomof2