Re: Some good news about Chaya for a change

[Guest guest]

Thank you for sharing your good news, Rochel. It is great that the

trachea and nares are so much better following the g-tube and

fundoplication!!

Some good news about for a change

Hi,

It looks like we might be able to avoid a trach. had her g-

tube/fundoplication done on Friday. The ENT also took a look at her

Friday while she was under anesthesia and said her airways looked

terrible. We started discussing traching her. But the ENT took

another look at her trachea and nares this afternoon and said they

look much better already. I'm so happy. Our best guess is that

reflux was the major problem and it's been taken care of now.

Shortly afterward she extubated herself. I guess she was getting

impatient ;-) They let her try to breathe on her on but she wasn't

ready so they had to reintubate her.

They are planning on giving her steroids tommorow and extubating her

on Friday and keep her under a humidity tent and see how she does.

Rochel

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]

Excellent news.

Kim

> Hi,

>

> It looks like we might be able to avoid a trach. had her g-

> tube/fundoplication done on Friday. The ENT also took a look at her

> Friday while she was under anesthesia and said her airways looked

> terrible. We started discussing traching her. But the ENT took

> another look at her trachea and nares this afternoon and said they

> look much better already. I'm so happy. Our best guess is that

> reflux was the major problem and it's been taken care of now.

>

> Shortly afterward she extubated herself. I guess she was getting

> impatient ;-) They let her try to breathe on her on but she wasn't

> ready so they had to reintubate her.

>

> They are planning on giving her steroids tommorow and extubating her

> on Friday and keep her under a humidity tent and see how she does.

>

> Rochel

>

>

>

> 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]

glad things are going well.

maria

Some good news about for a change

> Hi,

>

> It looks like we might be able to avoid a trach. had her g-

> tube/fundoplication done on Friday. The ENT also took a look at her

> Friday while she was under anesthesia and said her airways looked

> terrible. We started discussing traching her. But the ENT took

> another look at her trachea and nares this afternoon and said they

> look much better already. I'm so happy. Our best guess is that

> reflux was the major problem and it's been taken care of now.

>

> Shortly afterward she extubated herself. I guess she was getting

> impatient ;-) They let her try to breathe on her on but she wasn't

> ready so they had to reintubate her.

>

> They are planning on giving her steroids tommorow and extubating her

> on Friday and keep her under a humidity tent and see how she does.

>

> Rochel

>

>

>

> 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]

> Rochel - Great to hear that is responding so well. Just

curious as to why you chose the g-tube and fundo vs. the j-tube.

We felt we needed to rule out reflux. It was a little strange

because both her upper GI and esophagram diagnostic tests did not

show any reflux. They talked about giving her a pH probe but it

never happened. However, we were pretty sure we were seeing reflux

when she had the OG tube. She almost always had milk in her mouth

and in her secretions. She had the OJ tube for a few weeks and we

no longer saw milk in her mouth, but we were concerned there were

still gastric juices from the stomach refluxing and causing

problems. We are still hoping she can feed orally so we really did

the procedure more for the fundo than for the tube itself so that's

why we did the g-tube rather than the gj-tube. I have not heard of

Dr. yet. Dr. sman was the surgeon that did her

procedure. He is a general pediatric surgeon, not GI specifically.

BTW, is doing better than expected. She was extubated on

Friday and has been breathing pretty well. She still has some

strider, but she seems to be swallowing her secretions a little

better. She only needs suctioning 2 or 3 times a day. She had her

last dose of steriods today at noon. The nurse practitioner said

that if she does well over the next couple of days without the

steroids then she will probably be OK. So we are hopeful.

Good luck with Ethan,

Rochel