coughing with trach

[Guest guest]

Hi. My name is Bradley . My wife, , and I have a baby girl who

is 6 months old (born October 19, 1998) named Aubrey who has CHARGE. We live

in Lee's Summit, MO which is a suburb of Kansas City. Aubrey was in two

different hospitals for the first 3 months of her life, and has been in and

out a couple times since then. She had bilateral choanal atresia at birth

and had an operation at 3 days old to remove bone so that she could breathe.

Since then, she has had more operations for this same thing. She now has a

tracheostomy to breathe. She has no heart problems. She does have colobomas

in both eyes, but they are very small and in places that do not affect her

vision. She does have growth problems. She has been up to 13 lbs, but now

has dropped back to 12 lb 9 oz. We do not yet know if she has a growth

hormone problem. She is growing in length. She cannot hear in her left ear,

but she can hear fine in her right ear. Both of her ears are mishapen. She

cannot swallow, so she got a feeding tube and has had the reflux surgery back

in December. She currently has the mic-key button for feeding. The reflux

surgery did not work, as she constantly throws her food up. She has

torticollis in her neck. She currently has therapy twice a week - physical

and occupational. She has always favored her right side, and still slumps to

that side badly. She also slumps her back badly. We are scheduled to see an

orthapedic doctor in May to determine if there is any structural problem, or

if it is just muscle.

There is a lot more, and I could go on forever, but the main reason I am

writing now is to ask for help with a current problem. A couple weeks ago,

she caught a bad cold. While it appears that the cold is going away, she

still has a terrible cough and can't seem to shake it no matter what cough

medicine our pediatrician gives her. It is so bad and goes on for hours,

that she cannot eat (she throws up all her food), and coughs up blood. The

doctors tell us that is common with a trach.

Has anyone faced this problem with their child, and if so, any ideas of what

we can do? Is there any specific medicines that have worked for you? The

doctors that we have dealt with here in Kansas City just don't seem to know

much about CHARGE and have been little help. We don't know where else to

turn.

Any help would be greatly appreciated.

Thanks,

Bradley &