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Ivy
01-22-2010, 11:25 AM
Hi all, i'm new here. say hi to everyone :)
some background first. my baby jasmine is a little bit over 9 mons now; was trached in last July when she was only three mons old. she also has g tube because the swallow study showed she had some aspiration. before she had her g-tube done, she could do bottle feeding pretty well - had no problems of sucking or swallowing, and crazy for pacifier as well.

after the g tube however, she was not fed through her mouth at all, and gradually seemed to lose interest in pacifier too. much regretfully we didn't pay much attention to her lost interest in pacifier and would never imagine she could eventually forget how to swallow (and nobody working in the medical fields reminded us this could happen)! :eek: long story short, now baby jasmine doesn't suck or swallow at all, so all her saliva gets dripping down (called silently aspiration) to her trachea, which poses great danger to the health of her lungs! and we need to suction her every 5 mins while she's awake.

the above situation force us to look for some options. we pushed the medication of reducing secretion out of our consideration because we don't want her to dry out (this may sound stupid:blush: ). the other option could be to change her trach from cuffed to uncuffed which is supposedly could prevent aspiration. after some internet research though, i heard people say uncuffed ones could damage the trachea, lose the voice, etc. my husband assures me by saying the uncuffed ones can be deflated, and after being deflated, it could work perfectly the same as a cuffed one.

Anyone had the same experience? appreciate all advices and suggestions. :hug:

Ann
01-22-2010, 11:35 AM
My son has a cuffed trach, but he is also vent dependent and needs the cuff because he has such a large airleak and we don't want to upsize the trach. I would suggest that if you get a cuffed trach, you get the Bivona Tight-to-shaft. (TTS) When is it deflated, it is like a regular, uncuffed trach. You really don't ever want the cuff fully inflated because it can cause damage to the tracheal wall. Having a bit of an airleak not only protects the trachea, it also allows vocalization because air moves past the vocal chords. You can adjust how much you inflate the cuff to what works for your situation. I know a lot of people are completely against cuffed trachs, however, if you don't over inflate it, you should be fine. My son has had a cuffed trach for 8 years and he's not had any issues with damage to his airway because of it.

Ivy
01-22-2010, 11:53 AM
hi Ann, thanks a lot for the information. could you be more specific on why people against cuffed ones so much? any reasons other than the two i mentioned in my post (potential damage to trachea, and loss of voice)? thanks so much......

i browed your blog a while ago - you have four wonderful kids!

jamie
01-22-2010, 12:04 PM
my son also aspirates at all times, due to not being able to swallow, he is also on the vent. he started out with an uncuffed shiley, but the leak was awful, and like Ann said we did not want to go with a larger trach. we were afraid he would not be able to talk with the cuffed bivona, but he is able to keep it uncuffed during the day so it is much the same as the shiley when he is awake. it is in your child's best interest to limit the aspirations

also evan had no medical help in swallowing and even though his isssue is brainstem related, he may forget how to swallow completely if not given some swallow and chewing excersises.

Ivy
01-22-2010, 12:10 PM
thanks jamie. my baby jasmine is not on vent. i have to agree with you limiting the aspiration is in her best interest. tthanks again for all the useful information! say hi to evan.

Ann
01-22-2010, 12:12 PM
could you be more specific on why people against cuffed ones so much? any reasons other than the two i mentioned in my post (potential damage to trachea, and loss of voice)? thanks so much......


I think the number one reason is the fear of damage to the airway. A lot of the negative attitude towards cuffed trachs comes from the physicians themselves, many of whom don't have a lot of experience with cuffed trachs. Whether or not you need a cuffed trach depends a lot on why your child has a trach in the first place. Cuffed trachs are safe if used correctly.


i browed your blog a while ago - you have four wonderful kids!


Thanks, I think so too! :)

Ivy
01-22-2010, 12:29 PM
Thanks Ann. The reason jasmine had the trach is becasue her airway is born to be narrow, so her sats dropped low frequently. the ENT surgeon told us she chose the cuffed one becasue jasmine by that time was very little. i think i need to do more research on this.