to parents of kids having heart surgery...

January 2, 2004

Thanks ,

I appreciate your words of comfort.

kginn

On Saturday, January 3, 2004, at 07:57 AM, maryechick12@... wrote:

> When had his second heart surgery they said he was going to have

> his trach out , the stoma sewn shut and be intubated for two weeks,

> then

> have the stoma opened backup and the trach put back in ... I said was

> his ENT doctor has to be there or you just hook the vent to the trach

> (

> I think they were just trying to cut down the risk for infection)

> anyways ENT did not agree to do this ...they said he would be in the

> PICU for at least 2 weeks then the step down unit then the regular

> floor..Basically we were looking at at least a month stay ( I planned

> on moving to my parents house while he was in LOL )...He was there 12

> days!!!!!! I didn't get moved LOL ....

> did have set backs in fact he was never quite the same kid

> after words Before he went in he was signing all the time ...He was a

> snuggly kid...after words he pretty much stopped signing he didn't want

> to be messed with so much ...I cant explain it he just wasn't the same

> kid .. I want to say he was less motivated .....

> But one of the best hugs and kisses I ever got from him was

> right before he went in . I was crying my eyes out telling him over and

> over how sorry I was to do this to him again when he reached up smiled

> at me and wrapped his arms around my neck and kissed me ( kisses

> were very rare ) I calmed right down because I knew it had to be done

> and he was ok with it....

> So I guess the point of this is yes there can be set backs

> .......And they tell you the worst case always ...the stays may not be

> as long as they say... If your child normally need chest pt DO NOT

> slack

> on it because of heart surgery ended up back in because of

> pneumonia 5 days later..

> I wouldn't worry to much about picking your kids up after as

> kids ( How do I word this?) its not that kids don't feel pain but as

> adults we expect certain things to hurt and from what I have seen if

> you

> expect pain you get pain if you don't expect it it hurts a lot

> less...The amount of wire they use makes the break pretty stable the

> ribs should not move ..

> When came out he didn't act so much in pain as mad

> that his hands were tied down ...He took two IVs , the urinary cath,

> and the vent off ( he remembered after 11 months how to hold his breath

> and pop it off LOL) all with in five minutes of coming up with his

> hands

> tied down...LOL when they untied him he left everything alone..... he

> had his surgery on a Tuesday by Saturday he was up bouncing in an

> exer-saucer with no pain meds.....Hope this helps !!!

>

> mom to C .H.A.R.G.Er 9/30/01-8/3/03 and 3/27/03

>

> http://community.webtv.net/maryechick12/

>

> http://community.webtv.net/maryechick12/

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

January 3, 2004

When had his second heart surgery they said he was going to have

his trach out , the stoma sewn shut and be intubated for two weeks, then

have the stoma opened backup and the trach put back in ... I said was

his ENT doctor has to be there or you just hook the vent to the trach (

I think they were just trying to cut down the risk for infection)

anyways ENT did not agree to do this ...they said he would be in the

PICU for at least 2 weeks then the step down unit then the regular

floor..Basically we were looking at at least a month stay ( I planned

on moving to my parents house while he was in LOL )...He was there 12

days!!!!!! I didn't get moved LOL ....

did have set backs in fact he was never quite the same kid

after words Before he went in he was signing all the time ...He was a

snuggly kid...after words he pretty much stopped signing he didn't want

to be messed with so much ...I cant explain it he just wasn't the same

kid .. I want to say he was less motivated .....

But one of the best hugs and kisses I ever got from him was

right before he went in . I was crying my eyes out telling him over and

over how sorry I was to do this to him again when he reached up smiled

at me and wrapped his arms around my neck and kissed me ( kisses

were very rare ) I calmed right down because I knew it had to be done

and he was ok with it....

So I guess the point of this is yes there can be set backs

........And they tell you the worst case always ...the stays may not be

as long as they say... If your child normally need chest pt DO NOT slack

on it because of heart surgery ended up back in because of

pneumonia 5 days later..

I wouldn't worry to much about picking your kids up after as

kids ( How do I word this?) its not that kids don't feel pain but as

adults we expect certain things to hurt and from what I have seen if you

expect pain you get pain if you don't expect it it hurts a lot

less...The amount of wire they use makes the break pretty stable the

ribs should not move ..

When came out he didn't act so much in pain as mad

that his hands were tied down ...He took two IVs , the urinary cath,

and the vent off ( he remembered after 11 months how to hold his breath

and pop it off LOL) all with in five minutes of coming up with his hands

tied down...LOL when they untied him he left everything alone..... he

had his surgery on a Tuesday by Saturday he was up bouncing in an

exer-saucer with no pain meds.....Hope this helps !!!

mom to C .H.A.R.G.Er 9/30/01-8/3/03 and 3/27/03

http://community.webtv.net/maryechick12/

January 4, 2004

Thanks for the encouragement !

Weir

Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to

Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca