Re: Saying No to Drs-Update

[Guest guest]

Hello,

I am a true believer that if the doctor does not have time for my questions or

concerns then the doctor does not have time for my child. We have fired five

specialists because of this. I would suggest getting a second opinion. The

pulmonologist that you have is NOT giving you options. That is not good!

Just my opinion.

Remember, you are your child's voice speak clearly and loudly, don't give in and

don't give up.

, Randy & Garland (CHARGEr 4 yrs) Goodwin

---- mockfamily814 wrote:

=============

We had our mtg Tuesday- It did not go well. I am just as lost and

confused as ever. The pulmonologist showed up 45 min. late and told

us he could only spare 5 min. He then proceeded to run through all

of the reasons why Cedie is vent dependent that they have ruled out

so far and the 2 possible diagnosis left that could be determined

through the lung & muscle biopses. He did all that in 3 min or so

and then said he had to go. We had some great ?s to ask (thanks in

part to you Kim & Meg) but had no time to ask.. Yesterday I talk to

Gen Surgery about the procedures. For the lung, they would make a 4-

5cm incision across her chest, open up the chest cavity, and take a

piece of lung. The risks include damaging the lungs more, bleeding

into the lungs, and infection. That doesn't even include the effects

we know we will encounter from the GA!

The pulmon. said (several times) that he would NOT discharge Cedie

without a diagnosis, without these tests... But he also said that if

these tests don't show anything then he is going to insist on the

cardiac cath (cardiologits say she does NOT need one).

We are really at a lost as to what to do. She is doing so well and

really growing. We really hate to put her through all this trauma..

but we do want her to come home and would like to know why she needs

the vent..

Any advice?

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group 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 web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Hello,

I am a true believer that if the doctor does not have time for my questions or

concerns then the doctor does not have time for my child. We have fired five

specialists because of this. I would suggest getting a second opinion. The

pulmonologist that you have is NOT giving you options. That is not good!

Just my opinion.

Remember, you are your child's voice speak clearly and loudly, don't give in and

don't give up.

, Randy & Garland (CHARGEr 4 yrs) Goodwin

---- mockfamily814 wrote:

=============

We had our mtg Tuesday- It did not go well. I am just as lost and

confused as ever. The pulmonologist showed up 45 min. late and told

us he could only spare 5 min. He then proceeded to run through all

of the reasons why Cedie is vent dependent that they have ruled out

so far and the 2 possible diagnosis left that could be determined

through the lung & muscle biopses. He did all that in 3 min or so

and then said he had to go. We had some great ?s to ask (thanks in

part to you Kim & Meg) but had no time to ask.. Yesterday I talk to

Gen Surgery about the procedures. For the lung, they would make a 4-

5cm incision across her chest, open up the chest cavity, and take a

piece of lung. The risks include damaging the lungs more, bleeding

into the lungs, and infection. That doesn't even include the effects

we know we will encounter from the GA!

The pulmon. said (several times) that he would NOT discharge Cedie

without a diagnosis, without these tests... But he also said that if

these tests don't show anything then he is going to insist on the

cardiac cath (cardiologits say she does NOT need one).

We are really at a lost as to what to do. She is doing so well and

really growing. We really hate to put her through all this trauma..

but we do want her to come home and would like to know why she needs

the vent..

Any advice?

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group 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 web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Hello,

I am a true believer that if the doctor does not have time for my questions or

concerns then the doctor does not have time for my child. We have fired five

specialists because of this. I would suggest getting a second opinion. The

pulmonologist that you have is NOT giving you options. That is not good!

Just my opinion.

Remember, you are your child's voice speak clearly and loudly, don't give in and

don't give up.

, Randy & Garland (CHARGEr 4 yrs) Goodwin

---- mockfamily814 wrote:

=============

We had our mtg Tuesday- It did not go well. I am just as lost and

confused as ever. The pulmonologist showed up 45 min. late and told

us he could only spare 5 min. He then proceeded to run through all

of the reasons why Cedie is vent dependent that they have ruled out

so far and the 2 possible diagnosis left that could be determined

through the lung & muscle biopses. He did all that in 3 min or so

and then said he had to go. We had some great ?s to ask (thanks in

part to you Kim & Meg) but had no time to ask.. Yesterday I talk to

Gen Surgery about the procedures. For the lung, they would make a 4-

5cm incision across her chest, open up the chest cavity, and take a

piece of lung. The risks include damaging the lungs more, bleeding

into the lungs, and infection. That doesn't even include the effects

we know we will encounter from the GA!

The pulmon. said (several times) that he would NOT discharge Cedie

without a diagnosis, without these tests... But he also said that if

these tests don't show anything then he is going to insist on the

cardiac cath (cardiologits say she does NOT need one).

We are really at a lost as to what to do. She is doing so well and

really growing. We really hate to put her through all this trauma..

but we do want her to come home and would like to know why she needs

the vent..

Any advice?

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group 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 web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

i agree with michelle there when i had the line in the heart the nurses were

worried boug me cous i had pleural effusion and fluid well theyd ring him

and ring him nothing the other drs would ring him finally they just went

with the paed and the gen surgeions and just applied other meathods but when

ever they tried to ring about an ifection to the line as it was in the heart

no answer the nurses called him well one did she would say oh dr invisibles

been in again read the files and done nothing AGAIN and shed say and i was

with another person and missed him she was one of my favourite nruses to

think there were times where shed want to neglet the others just to catch

this person but she never did no one did we jsut went to genrals and said

now wat LOL sorry for rambling but get secnd opion please ellen

>

> Hello,

> I am a true believer that if the doctor does not have time for my

> questions or concerns then the doctor does not have time for my child. We

> have fired five specialists because of this. I would suggest getting a

> second opinion. The pulmonologist that you have is NOT giving you

> options. That is not good!

>

> Just my opinion.

>

> Remember, you are your child's voice speak clearly and loudly, don't give

> in and don't give up.

> , Randy & Garland (CHARGEr 4 yrs) Goodwin

>

> ---- mockfamily814 wrote:

>

> =============

> We had our mtg Tuesday- It did not go well. I am just as lost and

> confused as ever. The pulmonologist showed up 45 min. late and told

> us he could only spare 5 min. He then proceeded to run through all

> of the reasons why Cedie is vent dependent that they have ruled out

> so far and the 2 possible diagnosis left that could be determined

> through the lung & muscle biopses. He did all that in 3 min or so

> and then said he had to go. We had some great ?s to ask (thanks in

> part to you Kim & Meg) but had no time to ask.. Yesterday I talk to

> Gen Surgery about the procedures. For the lung, they would make a 4-

> 5cm incision across her chest, open up the chest cavity, and take a

> piece of lung. The risks include damaging the lungs more, bleeding

> into the lungs, and infection. That doesn't even include the effects

> we know we will encounter from the GA!

> The pulmon. said (several times) that he would NOT discharge Cedie

> without a diagnosis, without these tests... But he also said that if

> these tests don't show anything then he is going to insist on the

> cardiac cath (cardiologits say she does NOT need one).

> We are really at a lost as to what to do. She is doing so well and

> really growing. We really hate to put her through all this trauma..

> but we do want her to come home and would like to know why she needs

> the vent..

> Any advice?

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group 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 web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

i agree with michelle there when i had the line in the heart the nurses were

worried boug me cous i had pleural effusion and fluid well theyd ring him

and ring him nothing the other drs would ring him finally they just went

with the paed and the gen surgeions and just applied other meathods but when

ever they tried to ring about an ifection to the line as it was in the heart

no answer the nurses called him well one did she would say oh dr invisibles

been in again read the files and done nothing AGAIN and shed say and i was

with another person and missed him she was one of my favourite nruses to

think there were times where shed want to neglet the others just to catch

this person but she never did no one did we jsut went to genrals and said

now wat LOL sorry for rambling but get secnd opion please ellen

>

> Hello,

> I am a true believer that if the doctor does not have time for my

> questions or concerns then the doctor does not have time for my child. We

> have fired five specialists because of this. I would suggest getting a

> second opinion. The pulmonologist that you have is NOT giving you

> options. That is not good!

>

> Just my opinion.

>

> Remember, you are your child's voice speak clearly and loudly, don't give

> in and don't give up.

> , Randy & Garland (CHARGEr 4 yrs) Goodwin

>

> ---- mockfamily814 wrote:

>

> =============

> We had our mtg Tuesday- It did not go well. I am just as lost and

> confused as ever. The pulmonologist showed up 45 min. late and told

> us he could only spare 5 min. He then proceeded to run through all

> of the reasons why Cedie is vent dependent that they have ruled out

> so far and the 2 possible diagnosis left that could be determined

> through the lung & muscle biopses. He did all that in 3 min or so

> and then said he had to go. We had some great ?s to ask (thanks in

> part to you Kim & Meg) but had no time to ask.. Yesterday I talk to

> Gen Surgery about the procedures. For the lung, they would make a 4-

> 5cm incision across her chest, open up the chest cavity, and take a

> piece of lung. The risks include damaging the lungs more, bleeding

> into the lungs, and infection. That doesn't even include the effects

> we know we will encounter from the GA!

> The pulmon. said (several times) that he would NOT discharge Cedie

> without a diagnosis, without these tests... But he also said that if

> these tests don't show anything then he is going to insist on the

> cardiac cath (cardiologits say she does NOT need one).

> We are really at a lost as to what to do. She is doing so well and

> really growing. We really hate to put her through all this trauma..

> but we do want her to come home and would like to know why she needs

> the vent..

> Any advice?

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group 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 web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

acutaly having the line out was better different reg he visited at least

three times and talked to me good one so its good to try second opions

>

> i agree with michelle there when i had the line in the heart the nurses

> were worried boug me cous i had pleural effusion and fluid well theyd ring

> him and ring him nothing the other drs would ring him finally they just went

> with the paed and the gen surgeions and just applied other meathods but when

> ever they tried to ring about an ifection to the line as it was in the heart

> no answer the nurses called him well one did she would say oh dr invisibles

> been in again read the files and done nothing AGAIN and shed say and i was

> with another person and missed him she was one of my favourite nruses to

> think there were times where shed want to neglet the others just to catch

> this person but she never did no one did we jsut went to genrals and said

> now wat LOL sorry for rambling but get secnd opion please ellen

>

>

> >

> > Hello,

> > I am a true believer that if the doctor does not have time for my

> > questions or concerns then the doctor does not have time for my child. We

> > have fired five specialists because of this. I would suggest getting a

> > second opinion. The pulmonologist that you have is NOT giving you

> > options. That is not good!

> >

> > Just my opinion.

> >

> > Remember, you are your child's voice speak clearly and loudly, don't

> > give in and don't give up.

> > , Randy & Garland (CHARGEr 4 yrs) Goodwin

> >

> > ---- mockfamily814 wrote:

> >

> > =============

> > We had our mtg Tuesday- It did not go well. I am just as lost and

> > confused as ever. The pulmonologist showed up 45 min. late and told

> > us he could only spare 5 min. He then proceeded to run through all

> > of the reasons why Cedie is vent dependent that they have ruled out

> > so far and the 2 possible diagnosis left that could be determined

> > through the lung & muscle biopses. He did all that in 3 min or so

> > and then said he had to go. We had some great ?s to ask (thanks in

> > part to you Kim & Meg) but had no time to ask.. Yesterday I talk to

> > Gen Surgery about the procedures. For the lung, they would make a 4-

> > 5cm incision across her chest, open up the chest cavity, and take a

> > piece of lung. The risks include damaging the lungs more, bleeding

> > into the lungs, and infection. That doesn't even include the effects

> > we know we will encounter from the GA!

> > The pulmon. said (several times) that he would NOT discharge Cedie

> > without a diagnosis, without these tests... But he also said that if

> > these tests don't show anything then he is going to insist on the

> > cardiac cath (cardiologits say she does NOT need one).

> > We are really at a lost as to what to do. She is doing so well and

> > really growing. We really hate to put her through all this trauma..

> > but we do want her to come home and would like to know why she needs

> > the vent..

> > Any advice?

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group 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 web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

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

> >

[Guest guest]

acutaly having the line out was better different reg he visited at least

three times and talked to me good one so its good to try second opions

>

> i agree with michelle there when i had the line in the heart the nurses

> were worried boug me cous i had pleural effusion and fluid well theyd ring

> him and ring him nothing the other drs would ring him finally they just went

> with the paed and the gen surgeions and just applied other meathods but when

> ever they tried to ring about an ifection to the line as it was in the heart

> no answer the nurses called him well one did she would say oh dr invisibles

> been in again read the files and done nothing AGAIN and shed say and i was

> with another person and missed him she was one of my favourite nruses to

> think there were times where shed want to neglet the others just to catch

> this person but she never did no one did we jsut went to genrals and said

> now wat LOL sorry for rambling but get secnd opion please ellen

>

>

> >

> > Hello,

> > I am a true believer that if the doctor does not have time for my

> > questions or concerns then the doctor does not have time for my child. We

> > have fired five specialists because of this. I would suggest getting a

> > second opinion. The pulmonologist that you have is NOT giving you

> > options. That is not good!

> >

> > Just my opinion.

> >

> > Remember, you are your child's voice speak clearly and loudly, don't

> > give in and don't give up.

> > , Randy & Garland (CHARGEr 4 yrs) Goodwin

> >

> > ---- mockfamily814 wrote:

> >

> > =============

> > We had our mtg Tuesday- It did not go well. I am just as lost and

> > confused as ever. The pulmonologist showed up 45 min. late and told

> > us he could only spare 5 min. He then proceeded to run through all

> > of the reasons why Cedie is vent dependent that they have ruled out

> > so far and the 2 possible diagnosis left that could be determined

> > through the lung & muscle biopses. He did all that in 3 min or so

> > and then said he had to go. We had some great ?s to ask (thanks in

> > part to you Kim & Meg) but had no time to ask.. Yesterday I talk to

> > Gen Surgery about the procedures. For the lung, they would make a 4-

> > 5cm incision across her chest, open up the chest cavity, and take a

> > piece of lung. The risks include damaging the lungs more, bleeding

> > into the lungs, and infection. That doesn't even include the effects

> > we know we will encounter from the GA!

> > The pulmon. said (several times) that he would NOT discharge Cedie

> > without a diagnosis, without these tests... But he also said that if

> > these tests don't show anything then he is going to insist on the

> > cardiac cath (cardiologits say she does NOT need one).

> > We are really at a lost as to what to do. She is doing so well and

> > really growing. We really hate to put her through all this trauma..

> > but we do want her to come home and would like to know why she needs

> > the vent..

> > Any advice?

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group 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 web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

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

> >

[Guest guest]

I agree on both counts - if it's possible to fire doctors who don't

have time to answer your questions, it's a good thing to do. And if

it is possible to get a second opinion, do that, as well. What

service is Cedie admitted on (i.e. who is the specialist in charge of

this admission)? Is it pulmonology, cardiology, or something else?

Is there any way you can get the primary admitting doctor to talk to

the pulmonologist with you there? Or have a real care conference.

Yes they are busy, but your child is just as important as all the

ohter children and that committee meeting. Ask the nurses if the

hospital has anyone who can be assigned to " be on your side. "

Sometimes it can be a nurse, a genetic counselor, a " hospitalist " (new

specialty - a doctor who is the primary pediatrician while the child

is in the hospital), or someone from social services. You've got

questions ready - you need an advocate that the system will listen to.

Good luck - I wish there were a general answer for all hospital

systems, but they are all different.

Meg

Meg Hefner MS

Genetic Counselor

St. Louis MO meg@...

>

> =============

> We had our mtg Tuesday- It did not go well. I am just as lost and

> confused as ever. The pulmonologist showed up 45 min. late and told

> us he could only spare 5 min. He then proceeded to run through all

> of the reasons why Cedie is vent dependent that they have ruled out

> so far and the 2 possible diagnosis left that could be determined

> through the lung & muscle biopses. He did all that in 3 min or so

> and then said he had to go. We had some great ?s to ask (thanks in

> part to you Kim & Meg) but had no time to ask.. Yesterday I talk to

> Gen Surgery about the procedures. For the lung, they would make a 4-

> 5cm incision across her chest, open up the chest cavity, and take a

> piece of lung. The risks include damaging the lungs more, bleeding

> into the lungs, and infection. That doesn't even include the effects

> we know we will encounter from the GA!

> The pulmon. said (several times) that he would NOT discharge Cedie

> without a diagnosis, without these tests... But he also said that if

> these tests don't show anything then he is going to insist on the

> cardiac cath (cardiologits say she does NOT need one).

> We are really at a lost as to what to do. She is doing so well and

> really growing. We really hate to put her through all this trauma..

> but we do want her to come home and would like to know why she needs

> the vent..

> Any advice?

>

[Guest guest]

and how does he do surgery with out questions from parents and the kids

arent they the basis of the treatment thats what my paed allwasy said she

was like how can we treat u if u dont tel me whats going on and she was

right after that we had the best relationship ever i miss her she was the

best and as for the n\urses meg i had a few on our side the one that ordered

cardio to coem and then was seeing other people was on our side but she

couldnt allwasy be there when the drs came coz she was eather offf shift or

looking after another person and not at the desk oh well never was her or

any of the others fault love you all

>

> I once met with a general surgeon who told me " I wish you'd throw those

> questions in the garbage " . Kennedy was 6 months of age. She is 8 years

> old

> now and he has never and WILL never perform surgery on my daughter.

> I took a lot of time to painstakingly research and prepare my questions -

> if

> you cannot acknowledge me, you will NOT work with my child. Period.

> (And don't feel bad about it - it's not your job to make her/him feel

> good,

> it's your job to do your best for your child)

>

> --

> Weir

> kawfolks@...

> http://ca.geocities.com/weirfamilyrogers

>

>

>

[Guest guest]

and how does he do surgery with out questions from parents and the kids

arent they the basis of the treatment thats what my paed allwasy said she

was like how can we treat u if u dont tel me whats going on and she was

right after that we had the best relationship ever i miss her she was the

best and as for the n\urses meg i had a few on our side the one that ordered

cardio to coem and then was seeing other people was on our side but she

couldnt allwasy be there when the drs came coz she was eather offf shift or

looking after another person and not at the desk oh well never was her or

any of the others fault love you all

>

> I once met with a general surgeon who told me " I wish you'd throw those

> questions in the garbage " . Kennedy was 6 months of age. She is 8 years

> old

> now and he has never and WILL never perform surgery on my daughter.

> I took a lot of time to painstakingly research and prepare my questions -

> if

> you cannot acknowledge me, you will NOT work with my child. Period.

> (And don't feel bad about it - it's not your job to make her/him feel

> good,

> it's your job to do your best for your child)

>

> --

> Weir

> kawfolks@...

> http://ca.geocities.com/weirfamilyrogers

>

>

>

[Guest guest]

What if you put your questions in writing, then insist that you will

not authroize the procedure until the questions are answered.

Do not allow him to place the blame of how well she does or does not

do on you - if you feel she must have time just to be, then you

deserve to know what is the urgency of doing these tests now, when

they carry such a high risk?

I will put this bluntly, because you may not get answers unless you

do, so I apologize if it is way off target. They are questions none

of us like to put into words.

Does the pulmonary doctor think Cedie is in danger of dying?

If so, then the question is - is she more in danger with the tests or

without the tests?

Depending on what the tests show - would he do anything different that

would improve her chance of living?

If he does not think she is in danger of dying, then the same

questions apply, except you want to know

Depending on what the tests show - would he do anything different that

would improve her chance of coming off the vent?

Either way

Is there any danger in allowing her to come home now on the vent and

allowing you all time to be home and be a family when she is doing

well and growing, then do the tests later?

This is a rough time for you. I hope you get the answers you need to

feel okay in making your decisions. Another idea is that there might

be another doctor who is more willing to answer these questions. Your

pediatrician or cardiologist might know what the pulmonary doctors are

looking for and be able to answer your questions.

Kim

[Guest guest]

Thank you so much for the advice. It is so frustrating. My family

and my husband's family try to help but they just don't understand.

The issues we have to face with our CHARGE children are not cut and

dry...

From what I gather, she is not in danger. This is more about finding

out why she's had trouble getting off the vent, not how to fix her

lungs.

My fav nurse was back yesterday (and today). She spoke with the

attending yesterday and tried to enlighten him of our plight. She

says he could understand both sides. She asked him what the harm

would be in letting her go home for awhile and get stronger. Then

she could come back later this year to do the tests if they are

still warranted. He said he would discuss this with the

pulmonologist today (they round on Fridays).

Hopefully I will know how that discussion went by 3 or 4pm today...

(BTW-isn't it crazy that I have only 1 nurse that will actually

fight these doctors in Cedie's behalf! Thank GOD for her!!!!)

>

> What if you put your questions in writing, then insist that you

will

> not authroize the procedure until the questions are answered.

>

> Do not allow him to place the blame of how well she does or does

not

> do on you - if you feel she must have time just to be, then you

> deserve to know what is the urgency of doing these tests now, when

> they carry such a high risk?

>

> I will put this bluntly, because you may not get answers unless you

> do, so I apologize if it is way off target. They are questions

none

> of us like to put into words.

>

> Does the pulmonary doctor think Cedie is in danger of dying?

> If so, then the question is - is she more in danger with the tests

or

> without the tests?

> Depending on what the tests show - would he do anything different

that

> would improve her chance of living?

>

> If he does not think she is in danger of dying, then the same

> questions apply, except you want to know

> Depending on what the tests show - would he do anything different

that

> would improve her chance of coming off the vent?

>

> Either way

> Is there any danger in allowing her to come home now on the vent

and

> allowing you all time to be home and be a family when she is doing

> well and growing, then do the tests later?

>

> This is a rough time for you. I hope you get the answers you need

to

> feel okay in making your decisions. Another idea is that there

might

> be another doctor who is more willing to answer these questions.

Your

> pediatrician or cardiologist might know what the pulmonary doctors

are

> looking for and be able to answer your questions.

>

> Kim

>

[Guest guest]

Thank you so much for the advice. It is so frustrating. My family

and my husband's family try to help but they just don't understand.

The issues we have to face with our CHARGE children are not cut and

dry...

From what I gather, she is not in danger. This is more about finding

out why she's had trouble getting off the vent, not how to fix her

lungs.

My fav nurse was back yesterday (and today). She spoke with the

attending yesterday and tried to enlighten him of our plight. She

says he could understand both sides. She asked him what the harm

would be in letting her go home for awhile and get stronger. Then

she could come back later this year to do the tests if they are

still warranted. He said he would discuss this with the

pulmonologist today (they round on Fridays).

Hopefully I will know how that discussion went by 3 or 4pm today...

(BTW-isn't it crazy that I have only 1 nurse that will actually

fight these doctors in Cedie's behalf! Thank GOD for her!!!!)

>

> What if you put your questions in writing, then insist that you

will

> not authroize the procedure until the questions are answered.

>

> Do not allow him to place the blame of how well she does or does

not

> do on you - if you feel she must have time just to be, then you

> deserve to know what is the urgency of doing these tests now, when

> they carry such a high risk?

>

> I will put this bluntly, because you may not get answers unless you

> do, so I apologize if it is way off target. They are questions

none

> of us like to put into words.

>

> Does the pulmonary doctor think Cedie is in danger of dying?

> If so, then the question is - is she more in danger with the tests

or

> without the tests?

> Depending on what the tests show - would he do anything different

that

> would improve her chance of living?

>

> If he does not think she is in danger of dying, then the same

> questions apply, except you want to know

> Depending on what the tests show - would he do anything different

that

> would improve her chance of coming off the vent?

>

> Either way

> Is there any danger in allowing her to come home now on the vent

and

> allowing you all time to be home and be a family when she is doing

> well and growing, then do the tests later?

>

> This is a rough time for you. I hope you get the answers you need

to

> feel okay in making your decisions. Another idea is that there

might

> be another doctor who is more willing to answer these questions.

Your

> pediatrician or cardiologist might know what the pulmonary doctors

are

> looking for and be able to answer your questions.

>

> Kim

>

[Guest guest]

Thank you for your reply. I bet you were stunned when he said that!

Unfortunately, this pulmonologist and his partner are the only two

in our area (Memphis, TN). They each work alternating months at the

hospital.

I am looking into sending her records to a pulmonologist in

Nashville for a second opinion. If they would ever discharge her, I

could take her there myself...

>

> I once met with a general surgeon who told me " I wish you'd throw

those

> questions in the garbage " . Kennedy was 6 months of age. She is 8

years old

> now and he has never and WILL never perform surgery on my daughter.

> I took a lot of time to painstakingly research and prepare my

questions - if

> you cannot acknowledge me, you will NOT work with my child.

Period.

> (And don't feel bad about it - it's not your job to make her/him

feel good,

> it's your job to do your best for your child)

>

> --

> Weir

> kawfolks@...

> http://ca.geocities.com/weirfamily@...

>

>

>

[Guest guest]

Thank you so much for your input, Ellen. I think you are an

inspiration!

Mock - mom to Cedie Lynn (9 mth old CHArgEr)

Memohis,TN

> > >

> > > =============

> > > We had our mtg Tuesday- It did not go well. I am just as lost

and

> > > confused as ever. The pulmonologist showed up 45 min. late and

told

> > > us he could only spare 5 min. He then proceeded to run through

all

> > > of the reasons why Cedie is vent dependent that they have

ruled out

> > > so far and the 2 possible diagnosis left that could be

determined

> > > through the lung & muscle biopses. He did all that in 3 min or

so

> > > and then said he had to go. We had some great ?s to ask

(thanks in

> > > part to you Kim & Meg) but had no time to ask.. Yesterday I

talk to

> > > Gen Surgery about the procedures. For the lung, they would

make a 4-

> > > 5cm incision across her chest, open up the chest cavity, and

take a

> > > piece of lung. The risks include damaging the lungs more,

bleeding

> > > into the lungs, and infection. That doesn't even include the

effects

> > > we know we will encounter from the GA!

> > > The pulmon. said (several times) that he would NOT discharge

Cedie

> > > without a diagnosis, without these tests... But he also said

that if

> > > these tests don't show anything then he is going to insist on

the

> > > cardiac cath (cardiologits say she does NOT need one).

> > > We are really at a lost as to what to do. She is doing so well

and

> > > really growing. We really hate to put her through all this

trauma..

> > > but we do want her to come home and would like to know why she

needs

> > > the vent..

> > > Any advice?

> > >

> > >

> > >

> > >

> > >

> > > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > > http://www.imagestation.com/album/?id=2117043995

> > >

> > > Membership of this email support group 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 web site at http://www.chargesyndrome.org

> > >

> > > 8th International

> > > CHARGE Syndrome Conference, July, 2007. Information will be

available at

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

> > >

[Guest guest]

I am so glad you have her!

and I am GLAD she is not in danger! I am sure you want to know as

badly as him what is keeping her on the vent, but you must follow your

heart on what is best for her.

Kim

[Guest guest]

" (BTW-isn't it crazy that I have only 1 nurse that will actually

fight these doctors in Cedie's behalf! Thank GOD for her!!!!) "

Yes, thank goodness for those special people that pop up just when we need

them. Thankfully, we found one hiding in every corner. For some of them,

we were able to express our gratitude. For others, I can only hope that

they know what a difference they make.

I hope you get clear answers from the dr. I think Kim's idea of making the

questions in writing is a good one. Then the dr can reply in writing if he

doesn't have time to meet with you. Plus you have a record of your request.

It's never too early to learn the value of a papertrail!

Michele W

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

[Guest guest]

Just a thought, if you're sending records away, don't limit yourself to

geography. Find the best in the land and send them off. I remember many

folks with respiratory issues raving about Dr Cotton in OH. I don't know

any more, but I'm sure someone can chime in if I'm on the right track.

When I was hesitant about the unexpected hip surgery, I sent records up to

Mayo Clinic. I was willing to travel there, but the dr was more than

willing to review the records and give me his thoughts long-distance. If

the records would have indicated a need for him to see her, we could have

arranged that. Getting that 2nd opinion from a well-respected dr did a lot

to ease my mind.

Michele W

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