Re: Cincinnati Children's Hospital's

[Guest guest]

What is wrong with ,Cherise has a defect called Posterior Laryngeal

Cleft and apparently he did quite a few successfull operations on this.

Thanks for your input its allways nice to hear others opinions before making

a final decision.

Thank you

Re: Re: Cincinnati Children's Hospital's

we went to Dr COtton from New York, he is wonderful, however, someone said

it right, he cant " cure it all " he could not get erikas trach out, she

needed

more time.

we went there 3 x, stayed at Mc house. At the time it badly

needed updating, we had to share a bathroom with other familes ahe we had a

VERY small room;

However, that was 4 years ago, and i think i heard they expanded

good luck

cathie, mom to erika

[Guest guest]

What is wrong with ,Cherise has a defect called Posterior Laryngeal

Cleft and apparently he did quite a few successfull operations on this.

Thanks for your input its allways nice to hear others opinions before making

a final decision.

Thank you

Re: Re: Cincinnati Children's Hospital's

we went to Dr COtton from New York, he is wonderful, however, someone said

it right, he cant " cure it all " he could not get erikas trach out, she

needed

more time.

we went there 3 x, stayed at Mc house. At the time it badly

needed updating, we had to share a bathroom with other familes ahe we had a

VERY small room;

However, that was 4 years ago, and i think i heard they expanded

good luck

cathie, mom to erika

[Guest guest]

erikas problems with her airway we complicated. they orginally thought he

would reconstruct her airway, however, hers was more that her tongue kept

falling back and blocking the airway, tracheal malesia etc. so cotton thought

the only was would be to do a jaw distraction, move the jaw forward to bring

the tongue forward. so he sent us to the NYU craniel facial institute.

however, they said if we do that then we will have to do a 2nd surgery and

bring

the upper part forward or she would have a jaw that extended out,as she was

already ligned up. there suggestion was to give her more time to increase her

muscle strength. we did, 2 years alter it finally came out. however, after

it came out, her tongue still fell back and blocked her airway at night

(sleep apena) so she had to have BIPAP at night for 2 years, Now, its been 3

months, yesterday and she hasnt needed the BIPAP. so i think she needed to get

stronger and learn to keep her tongue forward.

cathie, mom to erika

[Guest guest]

erikas problems with her airway we complicated. they orginally thought he

would reconstruct her airway, however, hers was more that her tongue kept

falling back and blocking the airway, tracheal malesia etc. so cotton thought

the only was would be to do a jaw distraction, move the jaw forward to bring

the tongue forward. so he sent us to the NYU craniel facial institute.

however, they said if we do that then we will have to do a 2nd surgery and

bring

the upper part forward or she would have a jaw that extended out,as she was

already ligned up. there suggestion was to give her more time to increase her

muscle strength. we did, 2 years alter it finally came out. however, after

it came out, her tongue still fell back and blocked her airway at night

(sleep apena) so she had to have BIPAP at night for 2 years, Now, its been 3

months, yesterday and she hasnt needed the BIPAP. so i think she needed to get

stronger and learn to keep her tongue forward.

cathie, mom to erika

[Guest guest]

Cathie-

I remember when you were seeing Dr Cotton and going through all the

decision-making and dilemma about removing the trach. But hearing the story

completely after-the-fact is different than hearing it piece-by-piece as you

went through it. It must be satisfying to look back and know that you made

the right decisions after researching every possibility. Isn't that what we

all hope for? It must have been hard to " wait and see " if growing stronger

would really do the trick.

It's also encouraging to know that drs can look at a problem with an

open-mind and not be too eager to fix things with surgery just because they

can -- and not consider the possible complications of surgical options.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

I am glad you made the right choice.

Re: Re: Cincinnati Children's Hospital's

erikas problems with her airway we complicated. they orginally thought he

would reconstruct her airway, however, hers was more that her tongue kept

falling back and blocking the airway, tracheal malesia etc. so cotton

thought

the only was would be to do a jaw distraction, move the jaw forward to

bring

the tongue forward. so he sent us to the NYU craniel facial institute.

however, they said if we do that then we will have to do a 2nd surgery and

bring

the upper part forward or she would have a jaw that extended out,as she was

already ligned up. there suggestion was to give her more time to increase

her

muscle strength. we did, 2 years alter it finally came out. however,

after

it came out, her tongue still fell back and blocked her airway at night

(sleep apena) so she had to have BIPAP at night for 2 years, Now, its been

3

months, yesterday and she hasnt needed the BIPAP. so i think she needed to

get

stronger and learn to keep her tongue forward.

cathie, mom to erika

[Guest guest]

I am glad you made the right choice.

Re: Re: Cincinnati Children's Hospital's

erikas problems with her airway we complicated. they orginally thought he

would reconstruct her airway, however, hers was more that her tongue kept

falling back and blocking the airway, tracheal malesia etc. so cotton

thought

the only was would be to do a jaw distraction, move the jaw forward to

bring

the tongue forward. so he sent us to the NYU craniel facial institute.

however, they said if we do that then we will have to do a 2nd surgery and

bring

the upper part forward or she would have a jaw that extended out,as she was

already ligned up. there suggestion was to give her more time to increase

her

muscle strength. we did, 2 years alter it finally came out. however,

after

it came out, her tongue still fell back and blocked her airway at night

(sleep apena) so she had to have BIPAP at night for 2 years, Now, its been

3

months, yesterday and she hasnt needed the BIPAP. so i think she needed to

get

stronger and learn to keep her tongue forward.

cathie, mom to erika

[Guest guest]

I am glad you made the right choice.

Re: Re: Cincinnati Children's Hospital's

erikas problems with her airway we complicated. they orginally thought he

would reconstruct her airway, however, hers was more that her tongue kept

falling back and blocking the airway, tracheal malesia etc. so cotton

thought

the only was would be to do a jaw distraction, move the jaw forward to

bring

the tongue forward. so he sent us to the NYU craniel facial institute.

however, they said if we do that then we will have to do a 2nd surgery and

bring

the upper part forward or she would have a jaw that extended out,as she was

already ligned up. there suggestion was to give her more time to increase

her

muscle strength. we did, 2 years alter it finally came out. however,

after

it came out, her tongue still fell back and blocked her airway at night

(sleep apena) so she had to have BIPAP at night for 2 years, Now, its been

3

months, yesterday and she hasnt needed the BIPAP. so i think she needed to

get

stronger and learn to keep her tongue forward.

cathie, mom to erika

[Guest guest]

Michele,

wow you are right, at the time it was horrible going through all of the

trach issues. it is weird to look back. It is also hard to believe, luckily,

it

is all behind us now. " Good things come to those who wait " ! I have to

remember that when i address the many issues that are still ahead! now i am

trying to figure out how we will get her to eat and get ride of the fedding

tube!

thanks

Cathie, erikas mom

[Guest guest]

Michele,

wow you are right, at the time it was horrible going through all of the

trach issues. it is weird to look back. It is also hard to believe, luckily,

it

is all behind us now. " Good things come to those who wait " ! I have to

remember that when i address the many issues that are still ahead! now i am

trying to figure out how we will get her to eat and get ride of the fedding

tube!

thanks

Cathie, erikas mom

[Guest guest]

Michele,

wow you are right, at the time it was horrible going through all of the

trach issues. it is weird to look back. It is also hard to believe, luckily,

it

is all behind us now. " Good things come to those who wait " ! I have to

remember that when i address the many issues that are still ahead! now i am

trying to figure out how we will get her to eat and get ride of the fedding

tube!

thanks

Cathie, erikas mom