RE: choane repair evolution

[Guest guest]

, I'm not sure if I can help you, but I thought I would share with you

our experience. Whitney now has her second set of stints in as well. When she

was a day old, the ENT went up through the roof of her mouth and removed all

of the bone to create a large opening. Her little nose, at the time, could

barely hold the smallest stints. The ENT took them out at two weeks. She was

an in patient at the time. I remember the nurses putting saline in her nose

three times a day but, I do not remember her having a lot of secretions. We

brought her home from the hospital 4 weeks later, and we didn't have to suction

at all. She could handle her secretions just fine. The tissue kept closing,

and after several dilation's, she is now experiencing her second set of stints.

This time the biggest ones, so I was told. So far they have been in 8

weeks, with 4 more weeks to go. As I'm sure you can relate, we are hoping this

will be the final set of stints needed. Is what you are suctioning, regular

secretions, or could she have a cold? Just a thought.

DeAnn, Mom to Austin 8, 5, and Whitney 5 1/2 months

[Guest guest]

,

I know personally 2 people with choanal atresia, my son, and another boy who

had nothing else wrong with him, just that he had the choanal atresia. Both

of them had constant runny noses, and soooo much secretions, constantly

wiping and aspirating. In both cases, (we used the same doctor), the stents

were left in for 8 months. The reasoning behind it was to give their little

bodies a chance to grow, and when they grow the passages also grow. Talk to

your doctor about really leaving them in a long time like this and see what

his opinion is. We have never had a problem since (my son is 6 now), and

the other boy is now 4, and he has been fine also.

Debbie Matasker

choane repair evolution

Yesterday we faced the second surgery to repair my daugther choanes,

the stents were removed after 12 weeks and we are now worse than

ever, even though she is eating easily she has somuch secretions and

need to be aspirated directly in her nose, this seems to be a real

pain, any of you can tell me how it was for you? I have red that most

of our children repairs tend to close again several times, it is

important to mention that eventough we wait a little longer to remove

the stents, the choanaes were expanded from 3.5 mm to 7 and taht

means to me that all the cicatrizarion was removed and we will face

some problems. please let me know any of your experiences on the way

you faced the post operatory period, is it really important to

aspirate? the Dr recomended aspirating at least 3 times a day,

Thanks

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

----------------------------------------------------------------------------

----

[Guest guest]

Tahnks for your response, my daughter had the stents since 2days old

and were keept for 3 months, during these time we needed to suction

because when she ate a minimal amount of milk came to the stents

making it difficult for her to breath and keep eating, now the

surgery was to remove the stents and also to widen them a little more

but se has so much secretions, not a cold because she normally expel

them trough the side of the stents but now she has to swallow them

and seems to be stocked between the nose and the trough.

thanks

> , I'm not sure if I can help you, but I thought I would share

with you

> our experience. Whitney now has her second set of stints in as

well. When she

> was a day old, the ENT went up through the roof of her mouth and

removed all

> of the bone to create a large opening. Her little nose, at the

time, could

> barely hold the smallest stints. The ENT took them out at two

weeks. She was

> an in patient at the time. I remember the nurses putting saline in

her nose

> three times a day but, I do not remember her having a lot of

secretions. We

> brought her home from the hospital 4 weeks later, and we didn't

have to suction

> at all. She could handle her secretions just fine. The tissue

kept closing,

> and after several dilation's, she is now experiencing her second

set of stints.

> This time the biggest ones, so I was told. So far they have been

in 8

> weeks, with 4 more weeks to go. As I'm sure you can relate, we are

hoping this

> will be the final set of stints needed. Is what you are

suctioning, regular

> secretions, or could she have a cold? Just a thought.

>

> DeAnn, Mom to Austin 8, 5, and Whitney 5 1/2 months

>

>

>

[Guest guest]

Debbie thank for the advise, Now the stents are removed if the

choanaes close again I will pursue to have the bigger stents for a

longer period of time

Thanks

> ,

>

> I know personally 2 people with choanal atresia, my son, and

another boy who

> had nothing else wrong with him, just that he had the choanal

atresia. Both

> of them had constant runny noses, and soooo much secretions,

constantly

> wiping and aspirating. In both cases, (we used the same doctor),

the stents

> were left in for 8 months. The reasoning behind it was to give

their little

> bodies a chance to grow, and when they grow the passages also

grow. Talk to

> your doctor about really leaving them in a long time like this and

see what

> his opinion is. We have never had a problem since (my son is 6

now), and

> the other boy is now 4, and he has been fine also.

>

> Debbie Matasker

>

> choane repair evolution

>

>

> Yesterday we faced the second surgery to repair my daugther choanes,

> the stents were removed after 12 weeks and we are now worse than

> ever, even though she is eating easily she has somuch secretions and

> need to be aspirated directly in her nose, this seems to be a real

> pain, any of you can tell me how it was for you? I have red that

most

> of our children repairs tend to close again several times, it is

> important to mention that eventough we wait a little longer to

remove

> the stents, the choanaes were expanded from 3.5 mm to 7 and taht

> means to me that all the cicatrizarion was removed and we will face

> some problems. please let me know any of your experiences on the way

> you faced the post operatory period, is it really important to

> aspirate? the Dr recomended aspirating at least 3 times a day,

>

> Thanks

>

>

>

>

>

> Membership of this email support groups does not constitute

membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@c... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada,

you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@c... Thank you!

>

>

>

>

> --------------------------------------------------------------------

--------

> ----

>