Re: Amelie surgery

[Guest guest]

Dear Lesley,

Thank goodness Amelie did so well and you're all back home again !!!!

by the way-drowning is Not allowed...No,No, No !

stupid question-but the head of Amelie's bed is elevated-yes?

Sounds like another wonderful weekend on the way.

Thank goodness! You did good Mom!!!!!-and Darren too!-and the girls

too!-and Amelie especially!

('s mom)

[Guest guest]

Lesley-

After all that drama, you still have enough humor to share the possible

drowning! I love your posts!! I'm sure you need a few days to let it all

sink in and begin to sort out what's what and where to go from here. I must

say, my head is reeling from your post. Enjoy the roast potatoes and lil'

Miss Amelie as she begins to feel better post-op.

This is crazy, but I don't remember if she has a fundoplication. I assume

she must as that would be first try before going to a disassociation, right?

I'm with you that the reflux has got to be stopped before the damage is too

great, but I'd prefer a less dramatic solution. Eegads. So much to

consider...

I'm glad this drama is over and didn't get drawn out with more delays!

Michele W

Aubrie's mom

[Guest guest]

Michele

Amelie has had a fundo, and each repeat apparently is harder surgery

than the first fundo, and if it failed again I couldnt stand it, so

thats why we have gone for the big one, and end to it for good we

hope.

The strange thing about falling asleep in the bath, no one bothered

or noticed I was missing for so long, god help me if i have a

serious crisis in this house, they might find me a week later or

something!!

Wonderful to be back on the list and yes the word normality sounds

great.

love Lesley xx

>

> Lesley-

> After all that drama, you still have enough humor to share the

possible

> drowning! I love your posts!! I'm sure you need a few days to

let it all

> sink in and begin to sort out what's what and where to go from

here. I must

> say, my head is reeling from your post. Enjoy the roast potatoes

and lil'

> Miss Amelie as she begins to feel better post-op.

>

> This is crazy, but I don't remember if she has a fundoplication.

I assume

> she must as that would be first try before going to a

disassociation, right?

> I'm with you that the reflux has got to be stopped before the

damage is too

> great, but I'd prefer a less dramatic solution. Eegads. So much

to

> consider...

>

> I'm glad this drama is over and didn't get drawn out with more

delays!

>

> Michele W

> Aubrie's mom

>

[Guest guest]

Dear

yes its elevated, but you would die if you saw the state, 10 beach

towels wedge under the matress, I have the O.T. coming Thursday and

her cot needs addressing, I need a proper solution not a bunch of

towels!!

cheers Lesley x

>

> Dear Lesley,

> Thank goodness Amelie did so well and you're all back home again !!!!

> by the way-drowning is Not allowed...No,No, No !

> stupid question-but the head of Amelie's bed is elevated-yes?

> Sounds like another wonderful weekend on the way.

> Thank goodness! You did good Mom!!!!!-and Darren too!-and the

girls

> too!-and Amelie especially!

> ('s mom)

>

>

>

[Guest guest]

Lesley-

I'm thinking that the fact that they could allow you to be enjoying your

bath (or so they thought) without bothering you is testament to how well

things are going!

Have you seen the children's book " Five Minutes Peace " ? If not, check it

out for the girls. You'd love it.

Michele W

[Guest guest]

Lesley,

Thanks for the update - glad to hear that she finally had surgery. Anxious to

hear what comes of the dissociation.

Keep us posted!

Love,

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

[Guest guest]

coooooooool i allwas think of you great news ive had potasium in theatre

befor its worked with me donno why they didtn say it in the first place and

home the frist night as for going in the night befor i allwasy did to its

called precuation i think lol love u

>

> Lesley,

> Thanks for the update - glad to hear that she finally had

> surgery. Anxious to hear what comes of the dissociation.

> Keep us posted!

> Love,

>

>

>

> Weir

> Home: lisaweir@...

> Work: lisa.weir@...

> Phone:

> Web: http://ca.geocities.com/weirfamilyrogers

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Yep, .. a roller coaster indeed!

Make sure you're well buckled up.. and hold on tight!!

Obviously Amelie's a hell of a Fighter, breaking records on post-op

recovery.. Just the perfect match fo my Little Warrior!! LOL

Hopefully from now on it'll be more like those " enjoy the ladnscapes "

ride instead..

All the best from the neighbour island

Pat

[Guest guest]

Sorry, Lesley..

I mispelled your name.. *blush*

Pat- :S

[Guest guest]

Lesley,

WOW! this is some story. I am so glad for the happy ending,though, and your

little bug went home with you.

enjoy!

pam

[Guest guest]

LOL well its liek that course the other .leslie that how i rember it anyways

>

> Sorry, Lesley..

>

> I mispelled your name.. *blush*

>

>

> Pat- :S

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley,

I am so glad to have found this group and you, you are such a strong

woman and a wonderful mom. Where do you find all the energy??

I am glad they finally took Ameile in and you got some answers. Eva

goes in on Thursday I hope we get answers also.

I am glad nothing happened to you in the tub, that would not have

been good. I would love to relax in the tub, its not big enough for

me to relax to much.

I hope everything starts working out for you now, and you get more

and more answers.

Hugs,

Crystal and Eva (9 month charger)

>

> Hi all

>

> Roller coaster day, we went in the day before so they could check

> her obs bloods etc, make sure no probs, well the whole day nothing

> happened although i kept asking Why!!

> three shift changes later and the nursing staff at each change

asked

> why had we not come in the morning of surgery! explained reasons

> why.thought it was all a bit strange. starved her following

morning

> and gave a little glucose because she has low blood sugars,

surgeon

> came to see us at 1.30pm to say they had the ICU bed and we would

be

> first on the list at 2pm YIPEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE or

so

> we thought, the anaethesist came and spent 30 mins looking at her

> wont call them notes more like archives volumes 1 to 10. and then

> told us she couldnt go to theatre due to her potassium levels too

> low, OMG i said this was why we had bloods done last week why has

no

> one checked them she said well yes its not very good I expect they

> sign them before they are filed to avoid these things happening,

> perhaps if we try and get a sample over to the lab maybe, we could

> take her to theatre at the end, and give her some fluids in the

> meantime, I went ballistic, she apologised and said she wouldnt

take

> chances given the December episodes and off she went.

>

> The nurses were in hiding my face was a picture and then I saw the

> surgeon on his way to theatre, he smiled new nothing and said see

> you shortly, I burst out crying to his blank whats wrong and

Darren

> told him what was going on, given that we had been cancelled twice

> already, he looked mortified said dont worry I will sort it.

>

> 15 mins later a different surgeon appeared at the bed shook our

> hands and said she will go down next, we will sort the bloods and

> give her something for the low potassium whilst in theatre, thank

> god i thought, not much more I can take.

>

> SURGERY: it all went sort of well!!! her trachea is fine no

> fistulas, TOFS or gaps looked behind the voice box all appeared

> normal.

>

> she does have a very narrow left nasal passage way I think he said

> stenosis, but it doesnt warrant further surgery. there was visible

> evidence of refluxing i think he said it looks thicker, didnt

> elaborate on that.

>

> THE EARS were a DISASTER!! they are very abnormal inside the right

> ear had another false membrane he called it, and bones absent etc

> etc, the gromit in the right funny shaped ear has been dropped

into

> the inner ear and they couldnt get it out, so its been left

> somewhere inside, he said it was very difficult. the left gromit

is

> in and she had glue ear in both ears which they have removed.

>

> tHE BEST NEWS CAME WHEN SHE WAS TAKEN TO INTENSIVE CARE, SHE WAS

> JUST IN O2 NO VENTILATER, AND TONIGHT WE BROUGHT HER HOME, THE

BEST

> POST OP RECOVERY EVER.

>

> THE STOMACH MAN SAID HE WILL SEE US MARCH TIME, TO COMMENCE WITH

THE

> DISSOCIATION, ALTHOUGH AMELIES PAEDIATRICIAN DOESNT THINK WE

SHOULD

> GO AHEAD, SO THIS WORRIES ME, ALTHOUGH I CANT SEE AN ANSWER TO THE

> REFLUX COMING UP ALL THE TIME AND WHAT DAMAGE IN THE LONG RUN ITS

> DOING, SO I THINK WE HAVE TO GO WITH THE DISSOCIATION REGARDLESS

TO

> GIVE HER A BREAK AND HER LUNGS A BREAK.

>

>

> GOSH THATS THE UPDATE, NEED TO CATCH UP NOW WITH ALL HER CARES AND

> GET ORGANISED,

>

> AND GUESS WHAT I FELL ASLEEP IN THE BATH LAST NIGHT FOR 45 MINS I

> COULD HAVE DROWNED.... IF I WERENT SO BIG, AS TO FILL THE BATH!!!

>

> ALSO MORE ROAST POTATOES ON SUNDAY FOR THE CHAN CLAN BYE

>

> LESLEY XXXXAMELIE AND ALLXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

>

[Guest guest]

To my future in-laws to be !!!

I answer to anything, any name, I have noticed that USA spell

lesley :- , but in the UK this is the male version, you know

us stiff brits always getting it wrong, to be on the safe side most

people call me LES!!

Hows my cutie pie warrior, told Amelie not to worry, husband

material sorted, plus holidays to the Island another benefit, for me

of course.!!

take care Lesley x

>

> Sorry, Lesley..

>

> I mispelled your name.. *blush*

>

>

> Pat- :S

>

[Guest guest]

That is sooooo confusing caue my middle name is (IE) not lesley.

in Canada its oposit. is the femail verson...

goes off to check birth certificate...

it is infact spelt leslie. However the records department spelled my

first name wrong... im starting to feel confused... better go back and

do homework!

Chantelle

[Guest guest]

Crystal

thanks for the kindness, but take nothing away from yourself either,

we are all strong women with the traumas of charge land, its just we

all have a crisis, at different times, the important thing is

everyone helps out when its your turn!!

Good luck too for Eva Thursday.

love Lesley xx

> >

> > Hi all

> >

> > Roller coaster day, we went in the day before so they could

check

> > her obs bloods etc, make sure no probs, well the whole day

nothing

> > happened although i kept asking Why!!

> > three shift changes later and the nursing staff at each change

> asked

> > why had we not come in the morning of surgery! explained reasons

> > why.thought it was all a bit strange. starved her following

> morning

> > and gave a little glucose because she has low blood sugars,

> surgeon

> > came to see us at 1.30pm to say they had the ICU bed and we

would

> be

> > first on the list at 2pm YIPEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE or

> so

> > we thought, the anaethesist came and spent 30 mins looking at

her

> > wont call them notes more like archives volumes 1 to 10. and

then

> > told us she couldnt go to theatre due to her potassium levels

too

> > low, OMG i said this was why we had bloods done last week why

has

> no

> > one checked them she said well yes its not very good I expect

they

> > sign them before they are filed to avoid these things happening,

> > perhaps if we try and get a sample over to the lab maybe, we

could

> > take her to theatre at the end, and give her some fluids in the

> > meantime, I went ballistic, she apologised and said she wouldnt

> take

> > chances given the December episodes and off she went.

> >

> > The nurses were in hiding my face was a picture and then I saw

the

> > surgeon on his way to theatre, he smiled new nothing and said

see

> > you shortly, I burst out crying to his blank whats wrong and

> Darren

> > told him what was going on, given that we had been cancelled

twice

> > already, he looked mortified said dont worry I will sort it.

> >

> > 15 mins later a different surgeon appeared at the bed shook our

> > hands and said she will go down next, we will sort the bloods

and

> > give her something for the low potassium whilst in theatre,

thank

> > god i thought, not much more I can take.

> >

> > SURGERY: it all went sort of well!!! her trachea is fine no

> > fistulas, TOFS or gaps looked behind the voice box all appeared

> > normal.

> >

> > she does have a very narrow left nasal passage way I think he

said

> > stenosis, but it doesnt warrant further surgery. there was

visible

> > evidence of refluxing i think he said it looks thicker, didnt

> > elaborate on that.

> >

> > THE EARS were a DISASTER!! they are very abnormal inside the

right

> > ear had another false membrane he called it, and bones absent

etc

> > etc, the gromit in the right funny shaped ear has been dropped

> into

> > the inner ear and they couldnt get it out, so its been left

> > somewhere inside, he said it was very difficult. the left gromit

> is

> > in and she had glue ear in both ears which they have removed.

> >

> > tHE BEST NEWS CAME WHEN SHE WAS TAKEN TO INTENSIVE CARE, SHE WAS

> > JUST IN O2 NO VENTILATER, AND TONIGHT WE BROUGHT HER HOME, THE

> BEST

> > POST OP RECOVERY EVER.

> >

> > THE STOMACH MAN SAID HE WILL SEE US MARCH TIME, TO COMMENCE WITH

> THE

> > DISSOCIATION, ALTHOUGH AMELIES PAEDIATRICIAN DOESNT THINK WE

> SHOULD

> > GO AHEAD, SO THIS WORRIES ME, ALTHOUGH I CANT SEE AN ANSWER TO

THE

> > REFLUX COMING UP ALL THE TIME AND WHAT DAMAGE IN THE LONG RUN

ITS

> > DOING, SO I THINK WE HAVE TO GO WITH THE DISSOCIATION REGARDLESS

> TO

> > GIVE HER A BREAK AND HER LUNGS A BREAK.

> >

> >

> > GOSH THATS THE UPDATE, NEED TO CATCH UP NOW WITH ALL HER CARES

AND

> > GET ORGANISED,

> >

> > AND GUESS WHAT I FELL ASLEEP IN THE BATH LAST NIGHT FOR 45 MINS

I

> > COULD HAVE DROWNED.... IF I WERENT SO BIG, AS TO FILL THE BATH!!!

> >

> > ALSO MORE ROAST POTATOES ON SUNDAY FOR THE CHAN CLAN BYE

> >

> > LESLEY XXXXAMELIE AND ALLXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

> >

>

[Guest guest]

Lesley,

You are so funny! I hope we are invited to the wedding-to-be!

pam

[Guest guest]

Chantelle you lucky girl named after me (hahahahahah)/Lesley/Les

all the same hon dont worry.

lol Lesley x

>

> That is sooooo confusing caue my middle name is (IE) not

lesley.

> in Canada its oposit. is the femail verson...

>

>

> goes off to check birth certificate...

>

>

> it is infact spelt leslie. However the records department spelled my

> first name wrong... im starting to feel confused... better go back

and

> do homework!

>

>

> Chantelle

>

[Guest guest]

yah your Chan and im Chan(telle) and we are both

headstong, stubborn, like things done our way and very particular

about stuff. lol. All in a good way of cource. We rock

Chantelle

> >

> > That is sooooo confusing caue my middle name is (IE) not

> lesley.

> > in Canada its oposit. is the femail verson...

> >

> >

> > goes off to check birth certificate...

> >

> >

> > it is infact spelt leslie. However the records department

spelled my

> > first name wrong... im starting to feel confused... better go

back

> and

> > do homework!

> >

> >

> > Chantelle

> >

>

[Guest guest]

LOL love you all

>

> yah your Chan and im Chan(telle) and we are both

> headstong, stubborn, like things done our way and very particular

> about stuff. lol. All in a good way of cource. We rock

>

>

> Chantelle

>

>

>

> > >

> > > That is sooooo confusing caue my middle name is (IE) not

> > lesley.

> > > in Canada its oposit. is the femail verson...

> > >

> > >

> > > goes off to check birth certificate...

> > >

> > >

> > > it is infact spelt leslie. However the records department

> spelled my

> > > first name wrong... im starting to feel confused... better go

> back

> > and

> > > do homework!

> > >

> > >

> > > Chantelle

> > >

> >

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

xxxxxxxxxxxxxxxxxxxx to u all

>

> Lesley,

> WOW! this is some story. I am so glad for the happy ending,though, and

> your little bug went home with you.

>

> enjoy!

> pam

>

>

>

[Guest guest]

in a very kissy mood at the moment itrs boiling here needing rain now oh

well

>

> xxxxxxxxxxxxxxxxxxxx to u all

>

>

> >

> > Lesley,

> > WOW! this is some story. I am so glad for the happy ending,though, and

> > your little bug went home with you.

> >

> > enjoy!

> > pam

> >

> >

> >

[Guest guest]

Hahaha!! LOL

Not to be forgotten, that from mum's side, Aidan is basque, which

means a place to stay somewhere in the Spanish Basque-Country...

Pat-

> >

> > Sorry, Lesley..

> >

> > I mispelled your name.. *blush*

> >

> >

> > Pat- :S

> >

>

[Guest guest]

Pat

Even better the spanish Basque country, lovely setting, hot sun, I

will need to insist on annual visits around the time of their

anniversary, so can you hurry up and move back home!!! Also Pam and

a couple have mentioned the girlie gets to pay, dont you agree thats

a little old fashioned!!!!! I hope so!

Love to my future son-in-law cutie pie Aidan xx

MAYBE WE WILL BOTH NEED A LOTTERY WIN!!

lol Lesley XX

> > >

> > > Sorry, Lesley..

> > >

> > > I mispelled your name.. *blush*

> > >

> > >

> > > Pat- :S

> > >

> >

>