RE: Open-heart surgery concerns

[Guest guest]

erika had ASD and VSD repaired at 1 yr. my biggest suggestion is to make

sure you are totally happy with the surgeon adn the support in the PICU. post

care is very important as well as the actaul surgery. also our kiddos are

sensitive to the anesthia. i wish we had gone for a 3rd opinoin, we went with

the 2nd who did agree with the 1st.

erika had a stormy recovery, but she was aslso very small (10lbs) and quite

fragile at the time.

our prayers will be with you

cathie, mom to erika 9 CHARGEr

[Guest guest]

--

I agree with Kim, If the anesthesiologist has not worked with

CHARGErs before educate him as best you can. If he/she does not

listen to you...find another. Before Garlands last surgery the

anesthesiologist got an attitude over our concerns so we asked for a

different one who would listen. Yeah it upset the apple cart, but it

was my little boy he was knocking out and if he didnt understand the

issues related to CHARGE he wasnt going to be the anesthesiologist.

Just my 2 cents.

Randy

In CHARGE , Kim Lauger <klauger@e...> wrote:

> I think it is important to ask about the anesthesiologist. How

they choose

> to put your child to sleep initially, then which method of

administering

> anesthesia, then the pain management afterwards, such as leaving an

epidural

> in. All of those things make a big difference in how smooth the

transition

> into and out of surgery goes, and then there is the big deal of them

> monitoring your child when they are under. The doctors usually

have their

> favorites, so don't just allow pot luck of whoever is scheduled for

that

> day.

>

> Kim L

>

> On 12/1/04 12:40 PM, " NPTQueenie@a... " <NPTQueenie@a...> wrote:

>

> >

> > erika had ASD and VSD repaired at 1 yr. my biggest suggestion is

to make

> > sure you are totally happy with the surgeon adn the support in

the PICU.

> > post

> > care is very important as well as the actaul surgery. also our

kiddos are

> > sensitive to the anesthia. i wish we had gone for a 3rd

opinoin, we went

> > with

> > the 2nd who did agree with the 1st.

> > erika had a stormy recovery, but she was aslso very small (10lbs)

and quite

> > fragile at the time.

> > our prayers will be with you

> > cathie, mom to erika 9 CHARGEr

> >

> >

> >

[Guest guest]

Kaylea,

No particular advise from me as we are in different countries and the health

systems are different and we don't get choice of surgeon or anaesthetist

etc, but just to tell you that our daughter (now 4) had repairs of

all 3 and more at 7 weeks old and then at 6 months old. It is scary of

course. She was lucky, no complications and she recovered pretty quickly.

Hope it goes the same for your daughter.

Flo

[Guest guest]

Kay Lea

Sorry I didn't sign off but i hit the send button rather than minimising the

screen to attend to a work matter - work rather than home is often is the

only place I get to read and more importantly reply to CHARGE emails.

Regards and good luck

Simon

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: RE: Open-heart surgery concerns

>Date: Mon, 06 Dec 2004 11:43:42 +0000

>

>Kay Lea

>

>Our daughter (now 4 1/2) was born with an ASD,VSD and an AVSD

>together with 2 leaky valves and a PDA.

>

>She had the PDA ligated at 6/7 weeks - a life saving operation. When she

>was

>6 months she another operation to repair the AVSD,VSD, leaky valves and

>also

>remove a band from her pulmunary (?) artery that had been placed there at

>the tie of the PDA operation.

>

>The operations were successful. The AVSD and VSD were closed, the valves

>repaired and the pulmunary band removed and the artery fixed. She has been

>left with a tiny leak from the VSD, the ASD had been ignored as

>insignificant (now closed ?), the valves work at about 90% efficiency and

>there was a dribble from the PDA (no longer there).

>

>This again was a life saving operation, her heart had had to work so hard

>that the muscle walls of it had thickened making the heart chambers tiny.

>Her operation took 6 hours rather 4.

>

>Now the heart consultant only wants to see her every 18 months and she is

>always on the go.

>

>Any type of operation is scary, a heart operation more so - how much for us

>was brought home last week when was in for grommets (ears tubes for

>those of you not in the UK) as the anaesthnaitist remembered her from her

>heart operation (it had been touch and go).

>

>Don't let that scare you, your daughter is 9 their condition has not been

>life threatening. Although heart surgery is very major these operations are

>routine to the surgeons carrying them out.

>

>Good luck