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Re: Saying No to Drs-Update

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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?

>

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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

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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

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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

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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

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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@...

>

>

>

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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@...

>

>

>

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Cedie is admitted under the pulmonologist.... Another issue- he and

his partner are the only two pulmonologists in this area. I could

(I'm in the process of researching this) get a second opinion from a

pulmon. in Nashville (4 hrs away).

I never heard of a hospitalist- I'll have to look into that.

Anyhow, thank you for your advice. This list is really helping me

get a handle on this stuff. I can't express how much I appreciate

all of your input :-)

Mock - mom to Cedie Lynn (9 mth old as of yesterday)

Memphis, 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?

> >

>

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