Re: Kennedy's Cardiology Appt

[Guest guest]

In a message dated 6/11/03 6:31:13 PM US Eastern Standard Time,

gweir@... writes:

<< she will need to have ANOTHER open heart surgery within a year. >>

,

I'm so sorry to hear that. You and Kennedy hang in there and I'll keep " good

thoughts " for both of you. I go through the feelings you're having now

everytime Tryny goes in for his check ups (every 4 months) as his artificial

valve

is clogging again. His cardiologist has suggested that instead of replacing

his artificial valve in the next year or so, he can do a cardiac cath on him

and put a stint in that valve and that may buy him 7 to 10 years before we have

to crack his chest again. And I'm willing to try just about anything as

Tryny's already had his chest cracked twice.

Keep us posted on how Kennedy is doing. And be sure to take care of yourself

too.

Debra

[Guest guest]

Bummer!!!!! We hate to see our kids go through all that again, and the

anesthesia is always a concern. I am sure you will stay on top of it and

find the people you feel comfortable with doing the job.

kim

> Just when you thought you were out of the " medical " scene for a while...

> Kennedy had an ECHO today and a cardiology appt...routine...or so I thought.

> Her aorta is significantly narrowed and she will need to have ANOTHER open

> heart surgery within a year. I was pretty bowled over (total surprise, we

> thought " oh yeah, another routine heart checkup " ) but I am feeling better now.

> We need to make some tough decisions about who will do it, where it will be

> done, etc because she had an anaphylactic reaction to anesthetic in January.

> yay...another day in the life of a CHARGEr.....

> She, of course, is handling all of this much better than us...

> ~ Weir

> Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

> Saint , New Brunswick, Canada

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

> CHARGE Syndrome Canada - http://www.chargesyndrome.ca

>

>

>

>

>

[Guest guest]

Thanks Kim, I will be putting my foot down regarding anesthestists this time...I

was not happy with the last one. I will have the one I want or none at all this

time.

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

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

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Kennedy's Cardiology Appt

Bummer!!!!! We hate to see our kids go through all that again, and the

anesthesia is always a concern. I am sure you will stay on top of it and

find the people you feel comfortable with doing the job.

kim

> Just when you thought you were out of the " medical " scene for a while...

> Kennedy had an ECHO today and a cardiology appt...routine...or so I thought.

> Her aorta is significantly narrowed and she will need to have ANOTHER open

> heart surgery within a year. I was pretty bowled over (total surprise, we

> thought " oh yeah, another routine heart checkup " ) but I am feeling better

now.

> We need to make some tough decisions about who will do it, where it will be

> done, etc because she had an anaphylactic reaction to anesthetic in January.

> yay...another day in the life of a CHARGEr.....

> She, of course, is handling all of this much better than us...

> ~ Weir

> Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

> Saint , New Brunswick, Canada

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

> CHARGE Syndrome Canada - http://www.chargesyndrome.ca

>

>

>

>

>

[Guest guest]

Awww ,

I'm sorry to hear your news Just when you think things are getting a bit

easier something major like this happens. I must admit the cardiac issues are

the ones which scare me the most.

Hugs

Elaine

Mum to Elise (11yrs) & Jack (5yrs) CHaRGE

Scotland.

[Guest guest]

Wow. What caused the aorta to narrow?

One day at a time :-S

xxxxxxxx

Anne

Weir wrote:

> Just when you thought you were out of the " medical " scene for a while...

> Kennedy had an ECHO today and a cardiology appt...routine...or so I

> thought.

> Her aorta is significantly narrowed and she will need to have ANOTHER

> open heart surgery within a year. I was pretty bowled over (total

> surprise, we thought " oh yeah, another routine heart checkup " ) but I

> am feeling better now. We need to make some tough decisions about who

> will do it, where it will be done, etc because she had an anaphylactic

> reaction to anesthetic in January. yay...another day in the life of a

> CHARGEr.....

> She, of course, is handling all of this much better than us...

> ~ Weir

> Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

> Saint , New Brunswick, Canada

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

> CHARGE Syndrome Canada - http://www.chargesyndrome.ca

>

>

>

>

>

[Guest guest]

What a shock, I second Anne's question. How did this happen??

Could they hear problems with the stethoscope as well as see with the

ECHO the narrowing? Are they calling it coarctation? I'm so sorry to

hear this. You all are in my thoughts.

Mom to Kendra, and Camille

Kennedy's Cardiology Appt

Just when you thought you were out of the " medical " scene for a while...

Kennedy had an ECHO today and a cardiology appt...routine...or so I

thought. Her aorta is significantly narrowed and she will need to have

ANOTHER open heart surgery within a year. I was pretty bowled over

(total surprise, we thought " oh yeah, another routine heart checkup " )

but I am feeling better now. We need to make some tough decisions about

who will do it, where it will be done, etc because she had an

anaphylactic reaction to anesthetic in January. yay...another day in

the life of a CHARGEr..... She, of course, is handling all of this much

better than us... ~ Weir Mom to Kennedy, 5yr old CHARGEr, 13,

12, and wife to Graeme Saint , New Brunswick, Canada Visit the

Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

[Guest guest]

, WOW!!! Well, we all know you will make the right

decision--doctor-wise. good luck with your search--and I know it's a way

off, but you are in our thoughts. have a great week-end and recoup.

and the guys

Kennedy's Cardiology Appt

> Just when you thought you were out of the " medical " scene for a while...

> Kennedy had an ECHO today and a cardiology appt...routine...or so I

thought.

> Her aorta is significantly narrowed and she will need to have ANOTHER open

heart surgery within a year. I was pretty bowled over (total surprise, we

thought " oh yeah, another routine heart checkup " ) but I am feeling better

now. We need to make some tough decisions about who will do it, where it

will be done, etc because she had an anaphylactic reaction to anesthetic in

January. yay...another day in the life of a CHARGEr.....

> She, of course, is handling all of this much better than us...

> ~ Weir

> Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

> Saint , New Brunswick, Canada

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

> CHARGE Syndrome Canada - http://www.chargesyndrome.ca

>

>

>

>

>

[Guest guest]

Well she had a coarctation of the aorta at birth which they stretched out and

put a piece of someone else's heart tissue in there to fill up where they

stretched. It didn't grow along with her so it's much too small...

Today is better - I get over the shocks much quicker now.

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

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

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Kennedy's Cardiology Appt

Wow. What caused the aorta to narrow?

One day at a time :-S

xxxxxxxx

Anne

Weir wrote:

> Just when you thought you were out of the " medical " scene for a while...

> Kennedy had an ECHO today and a cardiology appt...routine...or so I

> thought.

> Her aorta is significantly narrowed and she will need to have ANOTHER

> open heart surgery within a year. I was pretty bowled over (total

> surprise, we thought " oh yeah, another routine heart checkup " ) but I

> am feeling better now. We need to make some tough decisions about who

> will do it, where it will be done, etc because she had an anaphylactic

> reaction to anesthetic in January. yay...another day in the life of a

> CHARGEr.....

> She, of course, is handling all of this much better than us...

> ~ Weir

> Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

> Saint , New Brunswick, Canada

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

> CHARGE Syndrome Canada - http://www.chargesyndrome.ca

>

>

>

>

>

[Guest guest]

Thanks Debra, that's the worst about it, I KNOW too much now about the surgery

and SHE knows too much about the O.R., pain, etc...

Blech...

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

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

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Kennedy's Cardiology Appt

In a message dated 6/11/03 6:31:13 PM US Eastern Standard Time,

gweir@... writes:

<< she will need to have ANOTHER open heart surgery within a year. >>

,

I'm so sorry to hear that. You and Kennedy hang in there and I'll keep " good

thoughts " for both of you. I go through the feelings you're having now

everytime Tryny goes in for his check ups (every 4 months) as his artificial

valve

is clogging again. His cardiologist has suggested that instead of replacing

his artificial valve in the next year or so, he can do a cardiac cath on him

and put a stint in that valve and that may buy him 7 to 10 years before we

have

to crack his chest again. And I'm willing to try just about anything as

Tryny's already had his chest cracked twice.

Keep us posted on how Kennedy is doing. And be sure to take care of yourself

too.

Debra

[Guest guest]

Elaine,

Me too, I'm afraid, esp since the anesthetic scare in January, I didn't want her

going out for ANYTHING, now this....

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

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

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Kennedy's Cardiology Appt

Awww ,

I'm sorry to hear your news Just when you think things are getting a bit

easier something major like this happens. I must admit the cardiac issues are

the ones which scare me the most.

Hugs

Elaine

Mum to Elise (11yrs) & Jack (5yrs) CHaRGE

Scotland.

[Guest guest]

Thanks , I need a BREAK, next Friday is the end of the school year and I " m

only doing one job this summer (Intervening for 5 hrs a week) so I hope to get a

bit of RELAX then...

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

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

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Kennedy's Cardiology Appt

> Just when you thought you were out of the " medical " scene for a while...

> Kennedy had an ECHO today and a cardiology appt...routine...or so I

thought.

> Her aorta is significantly narrowed and she will need to have ANOTHER open

heart surgery within a year. I was pretty bowled over (total surprise, we

thought " oh yeah, another routine heart checkup " ) but I am feeling better

now. We need to make some tough decisions about who will do it, where it

will be done, etc because she had an anaphylactic reaction to anesthetic in

January. yay...another day in the life of a CHARGEr.....

> She, of course, is handling all of this much better than us...

> ~ Weir

> Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

> Saint , New Brunswick, Canada

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

> CHARGE Syndrome Canada - http://www.chargesyndrome.ca

>

>

>

>

>

[Guest guest]

,

THe initial repair didn't " grow " with her...so my question is how many times can

this happen? I will be doing some MAJOR research into the hows and whys and

WHOs regarding this surgery before I let anyone put her out. We may travel to

an even larger center this time to have it done.

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

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

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Kennedy's Cardiology Appt

Just when you thought you were out of the " medical " scene for a while...

Kennedy had an ECHO today and a cardiology appt...routine...or so I

thought. Her aorta is significantly narrowed and she will need to have

ANOTHER open heart surgery within a year. I was pretty bowled over

(total surprise, we thought " oh yeah, another routine heart checkup " )

but I am feeling better now. We need to make some tough decisions about

who will do it, where it will be done, etc because she had an

anaphylactic reaction to anesthetic in January. yay...another day in

the life of a CHARGEr..... She, of course, is handling all of this much

better than us... ~ Weir Mom to Kennedy, 5yr old CHARGEr, 13,

12, and wife to Graeme Saint , New Brunswick, Canada Visit the

Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

[Guest guest]

Thanks Steffi...looking forward to seeing you guys again in Ohio...

I can't believe it's only 6 weeks away!

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

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

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Kennedy's Cardiology Appt

,

I am so sorry to hear about Kennedy's need for another surgery.

Sometimes I think the " fun " will never end! I'm always thankful for the

" boring "

times. Keep your chin up.....you know we will always be here to support you

in

any way we can. Love and kisses to you guys.

Steffi

[Guest guest]

-

I found this interesting. Aubrie's coarc repair was done by cutting out the

narrow area and stitching the good ends back together. I wonder if the

procedure varies regionally or if it depends on how large of an area is

affected. Knock-on-wood-- Aubrie's has been fine thus far.

Good luck in dealing with Kennedy's surgery plans.

Michele

Re: Kennedy's Cardiology Appt

Wow. What caused the aorta to narrow?

One day at a time :-S

xxxxxxxx

Anne

Weir wrote:

> Just when you thought you were out of the " medical " scene for a while...

> Kennedy had an ECHO today and a cardiology appt...routine...or so I

> thought.

> Her aorta is significantly narrowed and she will need to have ANOTHER

> open heart surgery within a year. I was pretty bowled over (total

> surprise, we thought " oh yeah, another routine heart checkup " ) but I

> am feeling better now. We need to make some tough decisions about who

> will do it, where it will be done, etc because she had an anaphylactic

> reaction to anesthetic in January. yay...another day in the life of a

> CHARGEr.....

> She, of course, is handling all of this much better than us...

> ~ Weir

> Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

> Saint , New Brunswick, Canada

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

> CHARGE Syndrome Canada - http://www.chargesyndrome.ca

>

>

>

>

>

[Guest guest]

My daughter has the coarc repaired as noted below at 3 weeks. At

10 months scar tissue had built up choking off the blood supply. They

ballooned her and all is well 4 years later. Could this work for you?

Re: Kennedy's Cardiology Appt

-

I found this interesting. Aubrie's coarc repair was done by cutting out

the narrow area and stitching the good ends back together. I wonder if

the procedure varies regionally or if it depends on how large of an area

is affected. Knock-on-wood-- Aubrie's has been fine thus far.

Good luck in dealing with Kennedy's surgery plans.

Michele

Re: Kennedy's Cardiology Appt

Wow. What caused the aorta to narrow?

One day at a time :-S

xxxxxxxx

Anne

Weir wrote:

> Just when you thought you were out of the " medical " scene for a

while...

> Kennedy had an ECHO today and a cardiology appt...routine...or so

I

> thought.

> Her aorta is significantly narrowed and she will need to have

ANOTHER

> open heart surgery within a year. I was pretty bowled over (total

> surprise, we thought " oh yeah, another routine heart checkup " ) but

I

> am feeling better now. We need to make some tough decisions about

who

> will do it, where it will be done, etc because she had an

anaphylactic

> reaction to anesthetic in January. yay...another day in the life

of a

> CHARGEr.....

> She, of course, is handling all of this much better than us...

> ~ Weir

> Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to

Graeme

> Saint , New Brunswick, Canada

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

> CHARGE Syndrome Canada - http://www.chargesyndrome.ca

>

>

>

>

>

[Guest guest]

In a message dated 6/12/03 1:18:36 PM US Eastern Standard Time,

gweir@... writes:

<< I KNOW too much now about the surgery and SHE knows too much about the

O.R., pain, etc...

Blech... >>

,

I know, I think that's the hardest part.

Love,

Debra

[Guest guest]

I'm not sure Kim, this is all just preliminary in my opinion so far, I will have

lots of meeting with the cardiology team, surgical team and anesthesia to check

on all my options. I will mention this to them though and see if that would be

an option...

thanks for letting me know,

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

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

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Kennedy's Cardiology Appt

Wow. What caused the aorta to narrow?

One day at a time :-S

xxxxxxxx

Anne

Weir wrote:

> Just when you thought you were out of the " medical " scene for a

while...

> Kennedy had an ECHO today and a cardiology appt...routine...or so

I

> thought.

> Her aorta is significantly narrowed and she will need to have

ANOTHER

> open heart surgery within a year. I was pretty bowled over (total

> surprise, we thought " oh yeah, another routine heart checkup " ) but

I

> am feeling better now. We need to make some tough decisions about

who

> will do it, where it will be done, etc because she had an

anaphylactic

> reaction to anesthetic in January. yay...another day in the life

of a

> CHARGEr.....

> She, of course, is handling all of this much better than us...

> ~ Weir

> Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to

Graeme

> Saint , New Brunswick, Canada

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

> CHARGE Syndrome Canada - http://www.chargesyndrome.ca

>

>

>

>

>

[Guest guest]

Thanks Michele, just another thing to deal with...I need a break!!!

Re: Kennedy's Cardiology Appt

Wow. What caused the aorta to narrow?

One day at a time :-S

xxxxxxxx

Anne

Weir wrote:

> Just when you thought you were out of the " medical " scene for a while...

> Kennedy had an ECHO today and a cardiology appt...routine...or so I

> thought.

> Her aorta is significantly narrowed and she will need to have ANOTHER

> open heart surgery within a year. I was pretty bowled over (total

> surprise, we thought " oh yeah, another routine heart checkup " ) but I

> am feeling better now. We need to make some tough decisions about who

> will do it, where it will be done, etc because she had an anaphylactic

> reaction to anesthetic in January. yay...another day in the life of a

> CHARGEr.....

> She, of course, is handling all of this much better than us...

> ~ Weir

> Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

> Saint , New Brunswick, Canada

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

> CHARGE Syndrome Canada - http://www.chargesyndrome.ca

>

>

>

>

>

[Guest guest]

,

I am so sorry to hear of Kennedy's heart. We will be sending positive

thoughts your way. Hang in there...

Pardon my ignorance, but what is an anaphylactic reaction? had a

reaction after her palate repair in Nov. 2001. IT was so scary!!! We were so

concerned to ever put her under again! We never found out what caused her

reaction --

anesthesia, meds, severity of surgery or other? In Aug. 2002 she had her

glossopexy released and a palate revision and everything went well. However,

that's not what we were expecting.

Best wishes,

Jan H. Mom to (CHa?RGE 2 1/2 yrs.)

[Guest guest]

,

I was out of town and on nomail when you posted about Kennedy so I didn't

get all of the details. I'm sorry there is a heart problem.

Kay

She who laughs.... LASTS

Re: Kennedy's Cardiology Appt

>

> ,

>

> I am so sorry to hear of Kennedy's heart. We will be sending positive

> thoughts your way. Hang in there...

>

> Pardon my ignorance, but what is an anaphylactic reaction? had a

> reaction after her palate repair in Nov. 2001. IT was so scary!!! We were

so

> concerned to ever put her under again! We never found out what caused her

reaction --

> anesthesia, meds, severity of surgery or other? In Aug. 2002 she had her

> glossopexy released and a palate revision and everything went well.

However,

> that's not what we were expecting.

>

> Best wishes,

> Jan H. Mom to (CHa?RGE 2 1/2 yrs.)

>

>

>

[Guest guest]

Kay,

Unfortunately it's from her original heart condition which was repaired at 9

days of age, the repair didn't grow with her...

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

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

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Kennedy's Cardiology Appt

>

> ,

>

> I am so sorry to hear of Kennedy's heart. We will be sending positive

> thoughts your way. Hang in there...

>

> Pardon my ignorance, but what is an anaphylactic reaction? had a

> reaction after her palate repair in Nov. 2001. IT was so scary!!! We were

so

> concerned to ever put her under again! We never found out what caused her

reaction --

> anesthesia, meds, severity of surgery or other? In Aug. 2002 she had her

> glossopexy released and a palate revision and everything went well.

However,

> that's not what we were expecting.

>

> Best wishes,

> Jan H. Mom to (CHa?RGE 2 1/2 yrs.)

>

>

>

[Guest guest]

,

Well I hope the repair this time goes well and grows along with Kennedy.

Will be praying.

Kay

She who laughs.... LASTS

Re: Kennedy's Cardiology Appt

>

>

> >

> > ,

> >

> > I am so sorry to hear of Kennedy's heart. We will be sending positive

> > thoughts your way. Hang in there...

> >

> > Pardon my ignorance, but what is an anaphylactic reaction? had a

> > reaction after her palate repair in Nov. 2001. IT was so scary!!! We

were

> so

> > concerned to ever put her under again! We never found out what caused

her

> reaction --

> > anesthesia, meds, severity of surgery or other? In Aug. 2002 she had

her

> > glossopexy released and a palate revision and everything went well.

> However,

> > that's not what we were expecting.

> >

> > Best wishes,

> > Jan H. Mom to (CHa?RGE 2 1/2 yrs.)

> >

> >

> >

[Guest guest]

Hello :

I'm sorry I've been away from the computer.

I am very sadden to hear about Kennedy's heart condition.

She is a very strong child and from what you've said a tough

customer. I am sure the operation will be very successful and so

will Kennedy's recovery.

Keeping you all in our thoughts and prayer's

Kis, laval qc.ca

mom to 11 1/2 yrs. old ChARger

wife to Steve

[Guest guest]

,

Have you looked into Children's Hospital in Seattle? They are known

for greatness overall, but I have heard that they have an awesome

cardiology department.

[Guest guest]

Thanks , I guess the first thing to get through is the cath which will

be within six months...

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

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

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Kennedy's Cardiology Appt

Hello :

I'm sorry I've been away from the computer.

I am very sadden to hear about Kennedy's heart condition.

She is a very strong child and from what you've said a tough

customer. I am sure the operation will be very successful and so

will Kennedy's recovery.

Keeping you all in our thoughts and prayer's

Kis, laval qc.ca

mom to 11 1/2 yrs. old ChARger

wife to Steve