RE: Stridor and Inverting

October 15, 2002

Thanks, Yuka, that is very kind of you. I am wondering if they are

ever going to actually look into sean's throat and see what the

problem is. I'd really like to know exactly what is swollen or

constricted. It's frustrating as you know... and maybe the worst is

just watching be so frustrated. We sort of thought we were out

of the woods when we came home the first, but now we see how naive we

were!

> > > Hi Bo and -

> > >

> > > I am hoping that by the time you are reading this that you are

safe

> > and

> > > happy and that is breathing comfortably.

> > > I just wanted to chime in with everyone else about the possible

> > causes-

> > >

> > > 's respiratory system was his Achilles heel for the first

four

> > years of

> > > his life. In the end - all the contributing factors were:

> > >

> > > (1) Stricturing of the tracheal scar tissue post TEF/EA repair,

> > which even

> > > with a tracheotomy would cause him to go completely blue

depending

> > on his

> > > head position

> > >

> > > (2) Aspiration and aspiration pneumonia from poor swallowing

> > coordination

> > > and esophageal stricturing post TEF/EA repair

> > >

> > > (3) Reflux, which in addition to all the GI distress also

> > silently

> > > aspirated these acidic stomach contents, which then mimicked

> > asthma. His

> > > reflux didn't even seem like 'reflux' at first - more like an

open

> > carafe.

> > > All I had to do was tilt his head lower than his torso and his

> > stomach

> > > contents would come running out his nose - and we saw the same

> > thing you

> > > mentioned - if the bolus was let to gravity feed too quickly, it

> > would erupt

> > > out his mouth-

> > >

> > > We also did the same thing did - whenever was

exhausting

> > himself

> > > with breathing (retracting), we would let the oxygen blow by

until

> > his

> > > breathing could relax, and would leave it on that level while he

> > slept.

> > >

> > > We went through alot of months of upper respiratory infections,

> > sometimes

> > > back to back - alot of mucolyctics, expectorants, decongestants,

> > nebulizer

> > > treatments, oxygen, suctioning, percussive chest therapy and

> > antibiotics.

> > > He was only hospitalized one time for pneumonia when he was

three.

> > It was

> > > the scariest thing - admitting him. I felt like I had somehow

> > failed. It

> > > was the nicest five days of that year. We were in the hospital

> > simply to

> > > get better - not to discover anything new, and there was no

> > rollercoaster -

> > > just oxygen, IV antibiotics, and alot of pediatric professionals

> > > complimenting us on 's care and development. It was only

then

> > that I

> > > realized how the NICU experience had a tremendous level of

trauma to

> > > it.......

> > >

> > > We are all rooting for your family here -

> > > take good care,

> > > best always,

> > >

> > > Yuka

> >

> > 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

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

> > www.chargesyndrome.org or by calling 1-.

> >

October 15, 2002

Thanks, Yuka, that is very kind of you. I am wondering if they are

ever going to actually look into sean's throat and see what the

problem is. I'd really like to know exactly what is swollen or

constricted. It's frustrating as you know... and maybe the worst is

just watching be so frustrated. We sort of thought we were out

of the woods when we came home the first, but now we see how naive we

were!

> > > Hi Bo and -

> > >

> > > I am hoping that by the time you are reading this that you are

safe

> > and

> > > happy and that is breathing comfortably.

> > > I just wanted to chime in with everyone else about the possible

> > causes-

> > >

> > > 's respiratory system was his Achilles heel for the first

four

> > years of

> > > his life. In the end - all the contributing factors were:

> > >

> > > (1) Stricturing of the tracheal scar tissue post TEF/EA repair,

> > which even

> > > with a tracheotomy would cause him to go completely blue

depending

> > on his

> > > head position

> > >

> > > (2) Aspiration and aspiration pneumonia from poor swallowing

> > coordination

> > > and esophageal stricturing post TEF/EA repair

> > >

> > > (3) Reflux, which in addition to all the GI distress also

> > silently

> > > aspirated these acidic stomach contents, which then mimicked

> > asthma. His

> > > reflux didn't even seem like 'reflux' at first - more like an

open

> > carafe.

> > > All I had to do was tilt his head lower than his torso and his

> > stomach

> > > contents would come running out his nose - and we saw the same

> > thing you

> > > mentioned - if the bolus was let to gravity feed too quickly, it

> > would erupt

> > > out his mouth-

> > >

> > > We also did the same thing did - whenever was

exhausting

> > himself

> > > with breathing (retracting), we would let the oxygen blow by

until

> > his

> > > breathing could relax, and would leave it on that level while he

> > slept.

> > >

> > > We went through alot of months of upper respiratory infections,

> > sometimes

> > > back to back - alot of mucolyctics, expectorants, decongestants,

> > nebulizer

> > > treatments, oxygen, suctioning, percussive chest therapy and

> > antibiotics.

> > > He was only hospitalized one time for pneumonia when he was

three.

> > It was

> > > the scariest thing - admitting him. I felt like I had somehow

> > failed. It

> > > was the nicest five days of that year. We were in the hospital

> > simply to

> > > get better - not to discover anything new, and there was no

> > rollercoaster -

> > > just oxygen, IV antibiotics, and alot of pediatric professionals

> > > complimenting us on 's care and development. It was only

then

> > that I

> > > realized how the NICU experience had a tremendous level of

trauma to

> > > it.......

> > >

> > > We are all rooting for your family here -

> > > take good care,

> > > best always,

> > >

> > > Yuka

> >

> > 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

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

> > www.chargesyndrome.org or by calling 1-.

> >

October 15, 2002

Thanks, Yuka, that is very kind of you. I am wondering if they are

ever going to actually look into sean's throat and see what the

problem is. I'd really like to know exactly what is swollen or

constricted. It's frustrating as you know... and maybe the worst is

just watching be so frustrated. We sort of thought we were out

of the woods when we came home the first, but now we see how naive we

were!

> > > Hi Bo and -

> > >

> > > I am hoping that by the time you are reading this that you are

safe

> > and

> > > happy and that is breathing comfortably.

> > > I just wanted to chime in with everyone else about the possible

> > causes-

> > >

> > > 's respiratory system was his Achilles heel for the first

four

> > years of

> > > his life. In the end - all the contributing factors were:

> > >

> > > (1) Stricturing of the tracheal scar tissue post TEF/EA repair,

> > which even

> > > with a tracheotomy would cause him to go completely blue

depending

> > on his

> > > head position

> > >

> > > (2) Aspiration and aspiration pneumonia from poor swallowing

> > coordination

> > > and esophageal stricturing post TEF/EA repair

> > >

> > > (3) Reflux, which in addition to all the GI distress also

> > silently

> > > aspirated these acidic stomach contents, which then mimicked

> > asthma. His

> > > reflux didn't even seem like 'reflux' at first - more like an

open

> > carafe.

> > > All I had to do was tilt his head lower than his torso and his

> > stomach

> > > contents would come running out his nose - and we saw the same

> > thing you

> > > mentioned - if the bolus was let to gravity feed too quickly, it

> > would erupt

> > > out his mouth-

> > >

> > > We also did the same thing did - whenever was

exhausting

> > himself

> > > with breathing (retracting), we would let the oxygen blow by

until

> > his

> > > breathing could relax, and would leave it on that level while he

> > slept.

> > >

> > > We went through alot of months of upper respiratory infections,

> > sometimes

> > > back to back - alot of mucolyctics, expectorants, decongestants,

> > nebulizer

> > > treatments, oxygen, suctioning, percussive chest therapy and

> > antibiotics.

> > > He was only hospitalized one time for pneumonia when he was

three.

> > It was

> > > the scariest thing - admitting him. I felt like I had somehow

> > failed. It

> > > was the nicest five days of that year. We were in the hospital

> > simply to

> > > get better - not to discover anything new, and there was no

> > rollercoaster -

> > > just oxygen, IV antibiotics, and alot of pediatric professionals

> > > complimenting us on 's care and development. It was only

then

> > that I

> > > realized how the NICU experience had a tremendous level of

trauma to

> > > it.......

> > >

> > > We are all rooting for your family here -

> > > take good care,

> > > best always,

> > >

> > > Yuka

> >

> > 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

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

> > www.chargesyndrome.org or by calling 1-.

> >

October 15, 2002

I second that...it has been the number one life-changing surgery for Kennedy.

We went in knowing the 30% risk of failure but were willing to take that chance.

We have been lucky, it is still intact now at almost age 5 ( she got it at 6

months)

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Re: Re: Stridor and Inverting

Bo,

The fundo has helped many CHARGE kids a lot! I really wish we had ours

sooner. We came close to getting a trach MANY times but always seemed to just

slide by without one. But lots of kids do get them. Anyway, I just wanted to

let you know that the fundo can be VERY help1ful and releive a lot of

suffering.2

Deedee

October 15, 2002

I second that...it has been the number one life-changing surgery for Kennedy.

We went in knowing the 30% risk of failure but were willing to take that chance.

We have been lucky, it is still intact now at almost age 5 ( she got it at 6

months)

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Re: Re: Stridor and Inverting

Bo,

The fundo has helped many CHARGE kids a lot! I really wish we had ours

sooner. We came close to getting a trach MANY times but always seemed to just

slide by without one. But lots of kids do get them. Anyway, I just wanted to

let you know that the fundo can be VERY help1ful and releive a lot of

suffering.2

Deedee

October 15, 2002

I second that...it has been the number one life-changing surgery for Kennedy.

We went in knowing the 30% risk of failure but were willing to take that chance.

We have been lucky, it is still intact now at almost age 5 ( she got it at 6

months)

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Re: Re: Stridor and Inverting

Bo,

The fundo has helped many CHARGE kids a lot! I really wish we had ours

sooner. We came close to getting a trach MANY times but always seemed to just

slide by without one. But lots of kids do get them. Anyway, I just wanted to

let you know that the fundo can be VERY help1ful and releive a lot of

suffering.2

Deedee

October 15, 2002

The trick as a new parent though is wanting to make sure we don't rush in to

unnecessary procedures and hoping that things will improve. When it is not

cut and dry, you absolutely have to have this procedure, these decisions are

so hard to make. For many of us, after the decision has been made and we

see how well our kids are doing, we only see the good and forget the anguish

of trying to decide.

Best wishes Bo and as you make your decisions.

Kim Lauger

----------

>From: maryechick12@...

>To: CHARGE

>Subject: Re: Re: Stridor and Inverting

>Date: Mon, Oct 14, 2002, 6:07 PM

>

> to be quite honest with you my child has both and both are a lot better

> then a dead child sorry to be so blunt but it really bothers me that

> people are so against these two things that can make life so much easier

> for their childern...

>

> http://community.webtv.net/maryechick12/

> http://community.webtv.net/maryechick12/pets

>

> 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

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

October 15, 2002

to be quite honest with you my child has both and both are a lot better

then a dead child sorry to be so blunt but it really bothers me that

people are so against these two things that can make life so much easier

for their childern...

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 15, 2002

to be quite honest with you my child has both and both are a lot better

then a dead child sorry to be so blunt but it really bothers me that

people are so against these two things that can make life so much easier

for their childern...

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 15, 2002

to be quite honest with you my child has both and both are a lot better

then a dead child sorry to be so blunt but it really bothers me that

people are so against these two things that can make life so much easier

for their childern...

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 15, 2002

Like I said before I was being very blunt there didnt mean to upset

anyone either just I wasnt given a choice for either one but right from

the start I could see he needed both it is just so frustrating when I

see how much both have helped But his doctors have seen other

CHARGE childern so they new what to look for right away and what had to

be done I guess we got really lucky that way ...there really were not

any choices to make ...they fed him he threw up ... he extubated himself

he couldnt breath it was very cut and dryed with him........ MAry

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

October 15, 2002