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In a message dated 6/3/2002 3:24:29 PM Pacific Daylight Time, oganm@...

writes:

> However, we're back to what in the world was her concern and how long will

> this report take to get to the doctor!

>

Marilyn,

Tryny has an echo done twice a year, every year and it only takes a day for

the cardiologist to get the results. All he has to do is pull it up on the

computer for preliminary results and if there are any abnormalities you'll be

contacted. I would call the cardiologist tomorrow morning and you can also

call the lab for preliminary results or to let them know you will be calling

the cardiologist for results about 2 hours later and want the results to him

by then. You'd be surprised what you can get them to do if you stand firm

and use some muscle.

Keep good thoughts. If the results were major, you would have been contacted

that same day (as we were with Tryny last year on a routine echo). We had

gotten home from the hospital and there was a message on my machine to get to

the cardiologist right away. Tryny's artificial heart valve was clogged (not

life threatening) but the cardiologist wanted to set a date within a week to

have it unclogged.

Let us know and I'll think about you and your concerns,

Debra

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In a message dated 6/3/2002 3:24:29 PM Pacific Daylight Time, oganm@...

writes:

> However, we're back to what in the world was her concern and how long will

> this report take to get to the doctor!

>

Marilyn,

Tryny has an echo done twice a year, every year and it only takes a day for

the cardiologist to get the results. All he has to do is pull it up on the

computer for preliminary results and if there are any abnormalities you'll be

contacted. I would call the cardiologist tomorrow morning and you can also

call the lab for preliminary results or to let them know you will be calling

the cardiologist for results about 2 hours later and want the results to him

by then. You'd be surprised what you can get them to do if you stand firm

and use some muscle.

Keep good thoughts. If the results were major, you would have been contacted

that same day (as we were with Tryny last year on a routine echo). We had

gotten home from the hospital and there was a message on my machine to get to

the cardiologist right away. Tryny's artificial heart valve was clogged (not

life threatening) but the cardiologist wanted to set a date within a week to

have it unclogged.

Let us know and I'll think about you and your concerns,

Debra

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In a message dated 6/3/2002 3:24:29 PM Pacific Daylight Time, oganm@...

writes:

> However, we're back to what in the world was her concern and how long will

> this report take to get to the doctor!

>

Marilyn,

Tryny has an echo done twice a year, every year and it only takes a day for

the cardiologist to get the results. All he has to do is pull it up on the

computer for preliminary results and if there are any abnormalities you'll be

contacted. I would call the cardiologist tomorrow morning and you can also

call the lab for preliminary results or to let them know you will be calling

the cardiologist for results about 2 hours later and want the results to him

by then. You'd be surprised what you can get them to do if you stand firm

and use some muscle.

Keep good thoughts. If the results were major, you would have been contacted

that same day (as we were with Tryny last year on a routine echo). We had

gotten home from the hospital and there was a message on my machine to get to

the cardiologist right away. Tryny's artificial heart valve was clogged (not

life threatening) but the cardiologist wanted to set a date within a week to

have it unclogged.

Let us know and I'll think about you and your concerns,

Debra

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Thoughts are with you and we'll hope for the best. Kim

----------

>

>To: <CHARGE >

>Subject: echo for

>Date: Mon, Jun 3, 2002, 2:48 PM

>

> It was a bit interesting today and I'm not sure how to take it.

> was referred to cardiology for an echo because of having apnea.

> The Pulmo said that having apnea over long periods of time can cause the

> heart to become enlarged. (Funny he's never ordered one for Kenny,

> although he's been using CPAP for apnea for a few years now.) He just

> wanted to have her checked. We haven't been to cardiology since

> was 1 year old and cleared for her ASD & PDA (closed on their own).

>

> The tech who did the echo really went over her good. A few times she

> looked a bit bothered - not a good view or something she didn't like? I

> don't know. She asked if had been to see any cardiologist

> recently. (No.) Also asked if they (Riley) would have any previous echo

> records on her to compare. (Only from newborn timeframe. I don't think we

> had one after that, even when we were released from them at 1 year.) When

> she got finished, she said she wanted a doctor to look at the echo. She

> came back and said they would send the report to our doctor!

>

> Now I am concerned, but not concerned! I don't know enough about what I

> was looking at. I knew when we were seeing the heart but I wasn't sure

> which parts I was seeing (liek ventricle, etc.). They didn't have the

> " color " when last had one. This one could show the red/blue for

> oxygenated and non-xygenated blood. Which, of course, I thought was very

> interesting. However, we're back to what in the world was her concern and

> how long will this report take to get to the doctor!

> Think good stuff for . This was one area that she had resolved long

> ago - or so we thought.

>

> Friends in CHARGE,

> Marilyn Ogan

> Mom of Kenny (12, ADD) and (9, CHARGE+)

> Wife of Rick

>

>

>

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Marilyn,

I really hope it's nothing...it is just awful when you think you have one thing

resolved and there it comes sneaking back...

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme

New Brunswick, Canada

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

ICQ# 1426476

echo for

It was a bit interesting today and I'm not sure how to take it.

was referred to cardiology for an echo because of having apnea. The

Pulmo said that having apnea over long periods of time can cause the heart to

become enlarged. (Funny he's never ordered one for Kenny, although he's been

using CPAP for apnea for a few years now.) He just wanted to have her checked.

We haven't been to cardiology since was 1 year old and cleared for her

ASD & PDA (closed on their own).

The tech who did the echo really went over her good. A few times she looked a

bit bothered - not a good view or something she didn't like? I don't know. She

asked if had been to see any cardiologist recently. (No.) Also asked

if they (Riley) would have any previous echo records on her to compare. (Only

from newborn timeframe. I don't think we had one after that, even when we were

released from them at 1 year.) When she got finished, she said she wanted a

doctor to look at the echo. She came back and said they would send the report

to our doctor!

Now I am concerned, but not concerned! I don't know enough about what I was

looking at. I knew when we were seeing the heart but I wasn't sure which parts

I was seeing (liek ventricle, etc.). They didn't have the " color " when

last had one. This one could show the red/blue for oxygenated and non-xygenated

blood. Which, of course, I thought was very interesting. However, we're back

to what in the world was her concern and how long will this report take to get

to the doctor!

Think good stuff for . This was one area that she had resolved long

ago - or so we thought.

Friends in CHARGE,

Marilyn Ogan

Mom of Kenny (12, ADD) and (9, CHARGE+)

Wife of Rick

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Marilyn,

I really hope it's nothing...it is just awful when you think you have one thing

resolved and there it comes sneaking back...

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme

New Brunswick, Canada

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

ICQ# 1426476

echo for

It was a bit interesting today and I'm not sure how to take it.

was referred to cardiology for an echo because of having apnea. The

Pulmo said that having apnea over long periods of time can cause the heart to

become enlarged. (Funny he's never ordered one for Kenny, although he's been

using CPAP for apnea for a few years now.) He just wanted to have her checked.

We haven't been to cardiology since was 1 year old and cleared for her

ASD & PDA (closed on their own).

The tech who did the echo really went over her good. A few times she looked a

bit bothered - not a good view or something she didn't like? I don't know. She

asked if had been to see any cardiologist recently. (No.) Also asked

if they (Riley) would have any previous echo records on her to compare. (Only

from newborn timeframe. I don't think we had one after that, even when we were

released from them at 1 year.) When she got finished, she said she wanted a

doctor to look at the echo. She came back and said they would send the report

to our doctor!

Now I am concerned, but not concerned! I don't know enough about what I was

looking at. I knew when we were seeing the heart but I wasn't sure which parts

I was seeing (liek ventricle, etc.). They didn't have the " color " when

last had one. This one could show the red/blue for oxygenated and non-xygenated

blood. Which, of course, I thought was very interesting. However, we're back

to what in the world was her concern and how long will this report take to get

to the doctor!

Think good stuff for . This was one area that she had resolved long

ago - or so we thought.

Friends in CHARGE,

Marilyn Ogan

Mom of Kenny (12, ADD) and (9, CHARGE+)

Wife of Rick

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Marilyn,

We had this same conversation with Kendra's cardiologist just last week

about possible cardiac complications from apnea. His explanation was that

the pulmonary arteries can sometimes become 'hard' and the blood can not

flow as well in some individuals who experience apnea. Then the heart has

to work harder causing pulmonary hypertension. An echo and a 12 lead EKG

can help assess this situation.

It appears from our conversation with him, that any damage that results to

the pulmonary arteries due to apnea is generally reversible by correcting

the problem through c-pap or surgical attention to the problem or other

corrective measures depending on the problem. For the first time ever I

heard that sometimes surgical correction can alleviate some of the effects

of 'low-tone' to the airways. He mentioned that making some of the extra

tissue or 'flaps' tighter, sometimes the obstructive closure of the airway

during sleep can be alleviated.

I do not know if the technician was alluding to such damage to the

pulmonary arteries or if there was something else going on or if the

technician was not sharing information in the sense that usually they are

asked not to offer explanations or opinions.

I would call the pediatrician right away and get some answers! After the

gastrostomy fiasco, they, at Riley, should be extremely responsive to your

concerns and should quickly get the information to your pediatrician!!!!!!!!!!

Please keep us posted.

At 04:48 PM 6/3/02 -0500, you wrote:

>It was a bit interesting today and I'm not sure how to take it.

> was referred to cardiology for an echo because of having

>apnea. The Pulmo said that having apnea over long periods of time can

>cause the heart to become enlarged. (Funny he's never ordered one for

>Kenny, although he's been using CPAP for apnea for a few years now.) He

>just wanted to have her checked. We haven't been to cardiology since

> was 1 year old and cleared for her ASD & PDA (closed on their own).

>

>The tech who did the echo really went over her good. A few times she

>looked a bit bothered - not a good view or something she didn't like? I

>don't know. She asked if had been to see any cardiologist

>recently. (No.) Also asked if they (Riley) would have any previous echo

>records on her to compare. (Only from newborn timeframe. I don't think we

>had one after that, even when we were released from them at 1 year.) When

>she got finished, she said she wanted a doctor to look at the echo. She

>came back and said they would send the report to our doctor!

>

>Now I am concerned, but not concerned! I don't know enough about what I

>was looking at. I knew when we were seeing the heart but I wasn't sure

>which parts I was seeing (liek ventricle, etc.). They didn't have the

> " color " when last had one. This one could show the red/blue for

>oxygenated and non-xygenated blood. Which, of course, I thought was very

>interesting. However, we're back to what in the world was her concern and

>how long will this report take to get to the doctor!

>Think good stuff for . This was one area that she had resolved

>long ago - or so we thought.

>

>Friends in CHARGE,

>Marilyn Ogan

>Mom of Kenny (12, ADD) and (9, CHARGE+)

>Wife of Rick

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Marilyn,

We had this same conversation with Kendra's cardiologist just last week

about possible cardiac complications from apnea. His explanation was that

the pulmonary arteries can sometimes become 'hard' and the blood can not

flow as well in some individuals who experience apnea. Then the heart has

to work harder causing pulmonary hypertension. An echo and a 12 lead EKG

can help assess this situation.

It appears from our conversation with him, that any damage that results to

the pulmonary arteries due to apnea is generally reversible by correcting

the problem through c-pap or surgical attention to the problem or other

corrective measures depending on the problem. For the first time ever I

heard that sometimes surgical correction can alleviate some of the effects

of 'low-tone' to the airways. He mentioned that making some of the extra

tissue or 'flaps' tighter, sometimes the obstructive closure of the airway

during sleep can be alleviated.

I do not know if the technician was alluding to such damage to the

pulmonary arteries or if there was something else going on or if the

technician was not sharing information in the sense that usually they are

asked not to offer explanations or opinions.

I would call the pediatrician right away and get some answers! After the

gastrostomy fiasco, they, at Riley, should be extremely responsive to your

concerns and should quickly get the information to your pediatrician!!!!!!!!!!

Please keep us posted.

At 04:48 PM 6/3/02 -0500, you wrote:

>It was a bit interesting today and I'm not sure how to take it.

> was referred to cardiology for an echo because of having

>apnea. The Pulmo said that having apnea over long periods of time can

>cause the heart to become enlarged. (Funny he's never ordered one for

>Kenny, although he's been using CPAP for apnea for a few years now.) He

>just wanted to have her checked. We haven't been to cardiology since

> was 1 year old and cleared for her ASD & PDA (closed on their own).

>

>The tech who did the echo really went over her good. A few times she

>looked a bit bothered - not a good view or something she didn't like? I

>don't know. She asked if had been to see any cardiologist

>recently. (No.) Also asked if they (Riley) would have any previous echo

>records on her to compare. (Only from newborn timeframe. I don't think we

>had one after that, even when we were released from them at 1 year.) When

>she got finished, she said she wanted a doctor to look at the echo. She

>came back and said they would send the report to our doctor!

>

>Now I am concerned, but not concerned! I don't know enough about what I

>was looking at. I knew when we were seeing the heart but I wasn't sure

>which parts I was seeing (liek ventricle, etc.). They didn't have the

> " color " when last had one. This one could show the red/blue for

>oxygenated and non-xygenated blood. Which, of course, I thought was very

>interesting. However, we're back to what in the world was her concern and

>how long will this report take to get to the doctor!

>Think good stuff for . This was one area that she had resolved

>long ago - or so we thought.

>

>Friends in CHARGE,

>Marilyn Ogan

>Mom of Kenny (12, ADD) and (9, CHARGE+)

>Wife of Rick

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We will be thinking and praying for that all is ok with her.

mom to 8years.

echo for

It was a bit interesting today and I'm not sure how to take it.

was referred to cardiology for an echo because of having apnea. The

Pulmo said that having apnea over long periods of time can cause the heart to

become enlarged. (Funny he's never ordered one for Kenny, although he's been

using CPAP for apnea for a few years now.) He just wanted to have her checked.

We haven't been to cardiology since was 1 year old and cleared for her

ASD & PDA (closed on their own).

The tech who did the echo really went over her good. A few times she looked a

bit bothered - not a good view or something she didn't like? I don't know. She

asked if had been to see any cardiologist recently. (No.) Also asked

if they (Riley) would have any previous echo records on her to compare. (Only

from newborn timeframe. I don't think we had one after that, even when we were

released from them at 1 year.) When she got finished, she said she wanted a

doctor to look at the echo. She came back and said they would send the report

to our doctor!

Now I am concerned, but not concerned! I don't know enough about what I was

looking at. I knew when we were seeing the heart but I wasn't sure which parts

I was seeing (liek ventricle, etc.). They didn't have the " color " when

last had one. This one could show the red/blue for oxygenated and non-xygenated

blood. Which, of course, I thought was very interesting. However, we're back

to what in the world was her concern and how long will this report take to get

to the doctor!

Think good stuff for . This was one area that she had resolved long

ago - or so we thought.

Friends in CHARGE,

Marilyn Ogan

Mom of Kenny (12, ADD) and (9, CHARGE+)

Wife of Rick

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We will be thinking and praying for that all is ok with her.

mom to 8years.

echo for

It was a bit interesting today and I'm not sure how to take it.

was referred to cardiology for an echo because of having apnea. The

Pulmo said that having apnea over long periods of time can cause the heart to

become enlarged. (Funny he's never ordered one for Kenny, although he's been

using CPAP for apnea for a few years now.) He just wanted to have her checked.

We haven't been to cardiology since was 1 year old and cleared for her

ASD & PDA (closed on their own).

The tech who did the echo really went over her good. A few times she looked a

bit bothered - not a good view or something she didn't like? I don't know. She

asked if had been to see any cardiologist recently. (No.) Also asked

if they (Riley) would have any previous echo records on her to compare. (Only

from newborn timeframe. I don't think we had one after that, even when we were

released from them at 1 year.) When she got finished, she said she wanted a

doctor to look at the echo. She came back and said they would send the report

to our doctor!

Now I am concerned, but not concerned! I don't know enough about what I was

looking at. I knew when we were seeing the heart but I wasn't sure which parts

I was seeing (liek ventricle, etc.). They didn't have the " color " when

last had one. This one could show the red/blue for oxygenated and non-xygenated

blood. Which, of course, I thought was very interesting. However, we're back

to what in the world was her concern and how long will this report take to get

to the doctor!

Think good stuff for . This was one area that she had resolved long

ago - or so we thought.

Friends in CHARGE,

Marilyn Ogan

Mom of Kenny (12, ADD) and (9, CHARGE+)

Wife of Rick

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