TrachKids.org

Lillie Brooke has her decanulation scheduled for September 8,2011! I can't believe this long adventure is coming to an end!I am excited and scared at the same time! I don't know how lillie is going to react without her "necklace" but I can only hope that the new adventure we have coming our way goes well!

Lillie Brooke, now three years old, passed her sleep study beautifully and is now being put on the or schedule to have one last broncoscopy done and perform her decanulation! I can't believe the time has finally come! I'm unsure how to react, but I'm sure it will be a wonderful experience! I'll finally be able to hear her voice for the first time! At this point all I can do is pray it all works out well!!!

Lillie had an ENT appointment yesterday to do yet another bronchoscopy. Only this time after it was over we actually received a little good news! Her Dr. said that her airway was open more than it ever has been and she only had a small peice of scar tissue under her vocal cords that he easily removed! This has been the best news that we have received in over a year! He has decided to just give her some time to grow in hopes that her airway will continue to open because it's still not open enough to remove her trach. Even though this is good news I have some concerns because her growth rate is very slow and I'm scared that her airway will close up again like it has done so many times in the past! All I can do is hope and pray that it doesn't! Scar tissue has always been a major set back for Lillie and I'm scared it will continue to be. Has anyone else had a problem with scar tissue this badly and if so do you have any litte tricks that worked for your chidren to stop it? I've had many surgeries myself and dealt with scarring but never for over a year! This scar tissue mess just doesn't seem to make sense!!!

Well,my daughter Lillie had her last stent removed and her ENT has now decided not to do anything else to her for about six months to let her grow a little so it looks like she'll have her trach another year or so. Her body just doesn't want to do what it needs to do to remove it. At first I was upset with the news of her keeping it longer than expected but after I thought about it it's not so bad. Maybe by growing some when she does go back to have her second rib graph and start over again maybe her body will work with her and everything will work out right. Has anybody out there been through this with any of their kids and if so how did it work out? Any input helps.

Well, my Lillie is now 2 years old and still no luck in removing her trach. :(  I have became very discouraged now because when she was born her ENT said she would only need the trach for about a year and now a year later and about 35 surgeries there just doesn't seem to be much success in removing it. Every time I think things are going well yet another set back happens. We were supposed to try her with a passey muir last month and that didn't happen yet either. I sometimes find myself very confused and depressed because no one told me it was going to be like this. I wasn't told how hard it was going to be to remove her trach and because I knew nothing about traches when she was born I kinda bought in to everything her Drs were telling me and it's just not like they said it was going to be. I sometimes feel Drs leave me in the dark on things even though they don't....I just don't know how much longer I can put her into surgery and not have a good result. I mean, I know nothing in life is a sure thing and life is meant to be hard but I just never thought it would be this difficult. Has anyone else out there ever felt like this and if so how did you get through it! Any help would be great....I know I'm not the only person who has been through this...I guess I'm just having a hard time figuring out hopw I sould feel and how to deal with all this madness.