TrachKids.org

Hello, as everyone know alexander just got off his vent. Wow its been much more easier=]...but now we have to go to the OR to see how his doing with his tracholbroncholmalacia, and subglottic stenosis. What im more worried about is the stenosis...thats the one they think my need to be repaired=[....I am hopeing for the best, every time that the role him down the hall there is always tears and fear,of what can happen. for all moms out there try to enjoy your child to the fullest because we never know what turn we may take. I love my kids they are my life, they are the reason im still here...There is no word that can express the huge the farthest love i feel for them . I would do anything to help my child get better.....they are my babes.....Happy Mother's day to all of us moms that have been threw the worst and that we are our childrens HEROS and we will never let them down...♥♥♥yesenia and alexander

hello everyone, as all of you know im alexanders mom, we have been threw allot, and when the doctors say possible decanulation its like,OMG=[HOW would we ever live without a trach. Its like hey if he has trouble breathing we all know that its just a tube on his trach an the vent is ON, AND WITHOUT THE TRACH THEN COMES INTUBATION! well alex had a doc's appt on thursday and he said that alex is doing very good, and that he needs to see him in the OR. with all 3 doctors. Ent, digestive,and pulmonary, to do a bronch an other scopes he also said there can be a possible decanulation or a recontructive surgery of his subglottic stenosis. i am very afraid of whats coming. I thought that in order to decanulate they kid had to have his trach capped, Does in it? Well alex wears an HEM or another name for it is a Portex thats what he wears 24/7 but its not caped. i dont know what to think, all i know is that im very scared... he is scheduled for july 19... any suggestions ? please leave your comment. 

hi, everyone...
           Well this is whats going on, Alex had an appointment with his doctor. so the doctor wants alex to come off the vent, so the medical company brought us a sleep oxymeter. that is going to record all night how he is breathing without the vent how his also keeping up his o2 and his ♥rate...well at home we have a compressor that is like a trach collar that humidifies the air ...we can use it when ever we decide to put this oxymeter, the thing is we are afraid his going to stop breathing, and he also like sleeping with his face on the mattress or a blanket over his face... What can we do? We have thought of maybe putting an HME its the humidifer moisterizer exchanger. it goes over the trach its clear and shaped like a cylinder. We have no clue in what else is ok. YOu know the Drs. say its ok, but its not like talking to a parent that has gone threw this. Well please email me or leave you comment. THANKS........ Alexanders mommy

♥ I am very happy! Alex passed his swallow study today. He can now drink liquids and food... I never thought this would happen... but you know never to loose your faith...

hi everyone,
                         Its Alexanders mommy, Nellie. I just wanted to update yall. We had an appointment with air and digestive. So the Pulmonary doc, n the ent, decided that alexander does not need the home vent anymore. Its kinda scary, even though i know the vent is going to be there just incase of an emergency, still im kinda worried . its like what if he has an apena, or he gets plugged. I dont know im very afraid. Does anyone knoe what to do in these cases. thanks know i have too go. Take care ever one.