Re: AMELIE HOME AT LAST!!!!!!

[Guest guest]

Lesley,

Sending huge hugs to you all.

It's so scary being home but a wonderful feeling.

Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

Scotland

[Guest guest]

Lesley,

Is there a higher fat content in the neocate advanced? When we moved Dylan

to higher fat content formulas he retched and retched, hard retching. How

can a tube stay where it is supposed to be if they are retching that hard.

I would not give any more of the new formula until I spoke with someone and

I would let them know that she was refluxing and that her sats dropped. Do

you think the sat was accurate or was it not picking up well, due to her

moving around a lot with the retching?

On the oximeter, you need to have a balance. Set the alarms so they do not

go off for any tiny change, but that it truly alerts you when you need

alerted. For example, don't set the sat level at 95 if you won't do

anything different, or don't set the high heart rate alarm at _____ if you

are not going to do anything. Truly have the numbers set at accurate

settings, when you get a new machine sometimes they are left on " factory "

settings and that may not be right for her. If it is alarming simply,

because she is moving and not getting a good signal, then I wish you good

luck - it is a pain! Remember to look at Amelie for your answers to how she

is doing, instead of relying only on the machine.

I am SOOOOO glad she is home - It would have been nice though if you had a

little bit of time before needing to introduce the chanege in formula.

Kim

> Dear All

>

> Brought Amelie home last night, we are waiting for news of the ENT

> surgery, but wasnt prepared to stay and get moved at the weekend

> again, all her equipment arrived new sats machine etc, and she is

> great, we are exhausted and stressed, the sats machine alarmed

> throughout the night like they do, and after the last arrest, we are

> living on our nerves!!

>

> We changed her formula today to neocate advanced from normal neocate,

> and this afternoon, she has started to retch and has been sick small

> amounts mucous etc, her sats have also dropped from 97 to 89 during

> this time, either coincidence or could the tube have come out of her

> jejunum and back into her stomach, these things only happen at home!!

> ont know whether to ring the hospital in case they say come back in!!

>

> Supposed to be happy and content, feeling apprehensive and on the edge,

> not sat down for two seconds yet, Amelie oblivious to it all!

> Lesleyx

>

>

>

>

>

>

> 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,

Being home after all the scarey thing you went threw and being

afraid is normal. I was on the edge for months after Eva came home.

You also still have more to come going back to the hospital.

I will keep praying and I hope it all goes well.

Hugs,

Crystal and Eva (9 month charger)

>

> Dear All

>

> Brought Amelie home last night, we are waiting for news of the ENT

> surgery, but wasnt prepared to stay and get moved at the weekend

> again, all her equipment arrived new sats machine etc, and she is

> great, we are exhausted and stressed, the sats machine alarmed

> throughout the night like they do, and after the last arrest, we

are

> living on our nerves!!

>

> We changed her formula today to neocate advanced from normal

neocate,

> and this afternoon, she has started to retch and has been sick

small

> amounts mucous etc, her sats have also dropped from 97 to 89

during

> this time, either coincidence or could the tube have come out of

her

> jejunum and back into her stomach, these things only happen at

home!!

> ont know whether to ring the hospital in case they say come back

in!!

>

> Supposed to be happy and content, feeling apprehensive and on the

edge,

> not sat down for two seconds yet, Amelie oblivious to it all!

> Lesleyx

>

[Guest guest]

In a message dated 18/01/2006 20:26:13 GMT Standard Time,

lesleychan@... writes:

hope you dont mind me asking but have you put the a in CHaRGE like

this for a reason I have noticed this before whats the significance,

is it to do with the parts of charge, should I be doing it ??

Hi Lesley,

Yes, it's cos Jack doesn't have choanal atresia but I suppose it's all a bit

out of date now with the new criteria.

Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

Scotland

[Guest guest]

Hey Lesley!!

So glad she is home... I have been following it all along but I really don't

post much. I just wanted to ask you about the formula also... Has she always

had problems on the formulas w/ wretching.... I can't remember and if so have

you ever tried a soy formula?? We tried all different formulas w/

and finally when we were about to have our fundo done for the third time we

switched his formula because he had gotten ill and on a fluke while he was sick

and switched to soy he quit throwing up and wretching all together. The only

time he wretches or vomits now is if he is truly sick or he is gagging on

drainage. Dont know if this will help or not but just wanted to let you know.

Kim C. mom to 3 1/2 yr old CHaRgEr, athan 13 1/2 yr old and

...... mommy to be with TWINS!!!!

Kim Lauger wrote:

Lesley,

Is there a higher fat content in the neocate advanced? When we moved Dylan

to higher fat content formulas he retched and retched, hard retching. How

can a tube stay where it is supposed to be if they are retching that hard.

I would not give any more of the new formula until I spoke with someone and

I would let them know that she was refluxing and that her sats dropped. Do

you think the sat was accurate or was it not picking up well, due to her

moving around a lot with the retching?

On the oximeter, you need to have a balance. Set the alarms so they do not

go off for any tiny change, but that it truly alerts you when you need

alerted. For example, don't set the sat level at 95 if you won't do

anything different, or don't set the high heart rate alarm at _____ if you

are not going to do anything. Truly have the numbers set at accurate

settings, when you get a new machine sometimes they are left on " factory "

settings and that may not be right for her. If it is alarming simply,

because she is moving and not getting a good signal, then I wish you good

luck - it is a pain! Remember to look at Amelie for your answers to how she

is doing, instead of relying only on the machine.

I am SOOOOO glad she is home - It would have been nice though if you had a

little bit of time before needing to introduce the chanege in formula.

Kim

> Dear All

>

> Brought Amelie home last night, we are waiting for news of the ENT

> surgery, but wasnt prepared to stay and get moved at the weekend

> again, all her equipment arrived new sats machine etc, and she is

> great, we are exhausted and stressed, the sats machine alarmed

> throughout the night like they do, and after the last arrest, we are

> living on our nerves!!

>

> We changed her formula today to neocate advanced from normal neocate,

> and this afternoon, she has started to retch and has been sick small

> amounts mucous etc, her sats have also dropped from 97 to 89 during

> this time, either coincidence or could the tube have come out of her

> jejunum and back into her stomach, these things only happen at home!!

> ont know whether to ring the hospital in case they say come back in!!

>

> Supposed to be happy and content, feeling apprehensive and on the edge,

> not sat down for two seconds yet, Amelie oblivious to it all!

> Lesleyx

>

>

>

>

>

>

> 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]

glad she is home hope you get some rest.

maria

AMELIE HOME AT LAST!!!!!!

> Dear All

>

> Brought Amelie home last night, we are waiting for news of the ENT

> surgery, but wasnt prepared to stay and get moved at the weekend

> again, all her equipment arrived new sats machine etc, and she is

> great, we are exhausted and stressed, the sats machine alarmed

> throughout the night like they do, and after the last arrest, we are

> living on our nerves!!

>

> We changed her formula today to neocate advanced from normal neocate,

> and this afternoon, she has started to retch and has been sick small

> amounts mucous etc, her sats have also dropped from 97 to 89 during

> this time, either coincidence or could the tube have come out of her

> jejunum and back into her stomach, these things only happen at home!!

> ont know whether to ring the hospital in case they say come back in!!

>

> Supposed to be happy and content, feeling apprehensive and on the edge,

> not sat down for two seconds yet, Amelie oblivious to it all!

> Lesleyx

>

>

>

>

>

>

> 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,

Oh my, what stories and what a rollar coaster ride! Just a bit of info,

Patty couldn't have any milk at all what whatsoever for years. She also

couldn't

have soy or products like that. She was on some prescription formula that I

forget the name. Probably doesn't matter as that was 21 years ago. She also

outgrew her allergies for the most part.

Sorry to hear about the drive by home visit. I am wishing she is home for

one of the best birthday presents there could be for you.

Always wishing you all the best.

Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to

[Guest guest]

Kim

I have just posted amelie is back on the heart and respiratory ward,

I did suspend the milk, and her sats machine was brand spanking new

in the box delivered from the manufacture, and the trace is spot on,

the nurses came to calibrate it (thinks thats what they called it)

and its million times better than the old one, the FAT content is

interesting and i shall bring this up tomorrow with the docs,

Darrens sleeping there tonight so he will keep a close eye on things,

One day soon we will get some enjoyment, its just all the unpacking

and now i have had to repack all her stuff, you know how depressing

it all gets, and the girls are gutted,they came home from school to

find no mum dad or amelie here just their nannie, it was

disapointing to say the least.

oh well our turn has to come soon,

thanks for the advice Lesley it always welcome xx

>

> > Dear All

> >

> > Brought Amelie home last night, we are waiting for news of the

ENT

> > surgery, but wasnt prepared to stay and get moved at the weekend

> > again, all her equipment arrived new sats machine etc, and she is

> > great, we are exhausted and stressed, the sats machine alarmed

> > throughout the night like they do, and after the last arrest, we

are

> > living on our nerves!!

> >

> > We changed her formula today to neocate advanced from normal

neocate,

> > and this afternoon, she has started to retch and has been sick

small

> > amounts mucous etc, her sats have also dropped from 97 to 89

during

> > this time, either coincidence or could the tube have come out of

her

> > jejunum and back into her stomach, these things only happen at

home!!

> > ont know whether to ring the hospital in case they say come back

in!!

> >

> > Supposed to be happy and content, feeling apprehensive and on

the edge,

> > not sat down for two seconds yet, Amelie oblivious to it all!

> > Lesleyx

> >

> >

> >

> >

> >

> >

> > 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@c... 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@c... .

> > 8th International

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

available at

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

> >

[Guest guest]

Dear Kim C.

out of my four girls three (inc amelie) are lactose intolerent with

eczema and other food allergies mainly dairy yoghurts etc,

Amelie has had several formulas, infatrini she was very sick on, i

told people for months and eventually they listed and when we

changed to neocate the sickness stoppped but not the reflux her

medicines still came up every day, I am not sure of the difference

in these two but Kim said the fat is different, maybe she struggles

with this aspect in her milk, it has to be something so simple

because she has been so well the last two weeks, and without getting

paranoid I thought i had done something wrong to make her get sick

again, becasue she was so fine when we left last night!!

thanks anyhow it seems like your christopher she is also sensitive

in this area.

love Lesley xx

>

> > Dear All

> >

> > Brought Amelie home last night, we are waiting for news of the

ENT

> > surgery, but wasnt prepared to stay and get moved at the weekend

> > again, all her equipment arrived new sats machine etc, and she is

> > great, we are exhausted and stressed, the sats machine alarmed

> > throughout the night like they do, and after the last arrest, we

are

> > living on our nerves!!

> >

> > We changed her formula today to neocate advanced from normal

neocate,

> > and this afternoon, she has started to retch and has been sick

small

> > amounts mucous etc, her sats have also dropped from 97 to 89

during

> > this time, either coincidence or could the tube have come out of

her

> > jejunum and back into her stomach, these things only happen at

home!!

> > ont know whether to ring the hospital in case they say come back

in!!

> >

> > Supposed to be happy and content, feeling apprehensive and on

the edge,

> > not sat down for two seconds yet, Amelie oblivious to it all!

> > Lesleyx

> >

> >

> >

> >

> >

> >

> > 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@c... 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@c... .

> > 8th International

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

available at

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

> >

[Guest guest]

Elaine,

thanks for the hugs but you will have to send some more, later....

hope you dont mind me asking but have you put the a in CHaRGE like

this for a reason I have noticed this before whats the significance,

is it to do with the parts of charge, should I be doing it ??

cheers Lesleyxxx

>

> Lesley,

> Sending huge hugs to you all.

> It's so scary being home but a wonderful feeling.

>

>

> Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

> Scotland

>

>

>

[Guest guest]

Gosh Lesley,

You will certainly deserve your turn to come soon. I was just about to post

a " hooray " for going home one when I read the

latest. Everyone in your household must be soooo exhausted.

Assume Amelie continued to retch and sats to drop? What is the deal now?

Sorry, have no advise for you as this is all unknown territory to us but

please know that as usual, lots of positive thoughts and crossed bits from

our household.

Flo

" oh well our turn has to come soon, "

>

>

[Guest guest]

Dear Lesley,

I dont have much to say... just to let you know .. that you are

continously in my thoughts and prayers.

xoxox

Dear All

>

> Brought Amelie home last night, we are waiting for news of the ENT

> surgery, but wasnt prepared to stay and get moved at the weekend

> again, all her equipment arrived new sats machine etc, and she is

> great, we are exhausted and stressed, the sats machine alarmed

> throughout the night like they do, and after the last arrest, we are

> living on our nerves!!

>

> We changed her formula today to neocate advanced from normal neocate,

> and this afternoon, she has started to retch and has been sick small

> amounts mucous etc, her sats have also dropped from 97 to 89 during

> this time, either coincidence or could the tube have come out of her

> jejunum and back into her stomach, these things only happen at home!!

> ont know whether to ring the hospital in case they say come back in!!

>

> Supposed to be happy and content, feeling apprehensive and on the edge,

> not sat down for two seconds yet, Amelie oblivious to it all!

> Lesleyx

>

>

>

>

>

>

> 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]

Be strong all will get better in time. Amelie is blessed to have a mother like

you.

Annette and Ethan (charger)

Lesley Chan wrote:

Dear All

Brought Amelie home last night, we are waiting for news of the ENT

surgery, but wasnt prepared to stay and get moved at the weekend

again, all her equipment arrived new sats machine etc, and she is

great, we are exhausted and stressed, the sats machine alarmed

throughout the night like they do, and after the last arrest, we are

living on our nerves!!

We changed her formula today to neocate advanced from normal neocate,

and this afternoon, she has started to retch and has been sick small

amounts mucous etc, her sats have also dropped from 97 to 89 during

this time, either coincidence or could the tube have come out of her

jejunum and back into her stomach, these things only happen at home!!

ont know whether to ring the hospital in case they say come back in!!

Supposed to be happy and content, feeling apprehensive and on the edge,

not sat down for two seconds yet, Amelie oblivious to it all!

Lesleyx

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]

Ahhhhh, so if Amelie has colobomas, heart defects and ears for now i

should put CHargE, I dont know about retardation growth, and her

privates look normal to me and I have four of that type in here, Daz

calls them front bums!!

thanks for that

Lesley plus 3 kids plus Amelie CHargE xxxx

>

>

> In a message dated 18/01/2006 20:26:13 GMT Standard Time,

> lesleychan@h... writes:

>

> hope you dont mind me asking but have you put the a in CHaRGE

like

> this for a reason I have noticed this before whats the

significance,

> is it to do with the parts of charge, should I be doing it ??

>

>

>

> Hi Lesley,

> Yes, it's cos Jack doesn't have choanal atresia but I suppose it's

all a bit

> out of date now with the new criteria.

>

> Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

> Scotland

>

>

>

>

[Guest guest]

Oh Lesley,

Maybe she did pick up a virus over this past weekend-thats what

happened to us. We were home for 4-5 days before got sick-

throwing up, fever-I was devestated thinking I wan't going to be able

to keep her at home..but her primary nurse was there the night we

went back in-and she confessed she had had an illness, and that what

had looked REAL familiar. I figured God what just checking to

make sure I was on my toes..(lol?)(real funny).

Actually, I'm with everybody else-I too believe its the formula

change-its a nasty little trick the hospitals pull-they change things

when they send U home. We always switched to pedialyte when the

formula caused a gastric catastrophe...do they still do this? Next

time-no changes right away-don't U feel U have to beat them over the

head!?!!!?! I'll come whack 'em for you-I still owe some people.

>

> Lesley,

>

> Oh my, what stories and what a rollar coaster ride! Just a bit of

info,

> Patty couldn't have any milk at all what whatsoever for years. She

also couldn't

> have soy or products like that. She was on some prescription

formula that I

> forget the name. Probably doesn't matter as that was 21 years

ago. She also

> outgrew her allergies for the most part.

>

> Sorry to hear about the drive by home visit. I am wishing she is

home for

> one of the best birthday presents there could be for you.

>

> Always wishing you all the best.

>

>

> Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to

>

>

>

[Guest guest]

Bonnie,

U hit it out of the park

-a " drive-by " visit home...

Lesley's going to love it! I did!

>

> Lesley,

>

> Oh my, what stories and what a rollar coaster ride! Just a bit of

info,

> Patty couldn't have any milk at all what whatsoever for years. She

also couldn't

> have soy or products like that. She was on some prescription

formula that I

> forget the name. Probably doesn't matter as that was 21 years

ago. She also

> outgrew her allergies for the most part.

>

> Sorry to hear about the drive by home visit. I am wishing she is

home for

> one of the best birthday presents there could be for you.

>

> Always wishing you all the best.

>

>

> Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to

>

>

>

[Guest guest]

Lesly you know with me they allwasy tested the formual on me in there be for

they sent me HOME WHY couldnt they of doen that ok i admit taht you probly

needed to get her home but isnt ti better to have her home healthy than

going back the next day thats just how i see it well next time see if you

can at least try the formual one day befor discharge so if it doesnt wrok

you know befor they go to send her home my doctor allways did that she never

sent me home unlessshe was sure i was ready she came in quite a few times

ready to sign discharge papers and i had gotten sic again with t\dumpign and

stuff so she enver set a date she just said soon glad i read the other post

befor this LOL love you hugs ellen wanting to kill your doctors and send

mine to you

>

> Bonnie,

> U hit it out of the park

> -a " drive-by " visit home...

> Lesley's going to love it! I did!

>

>

>

> >

> > Lesley,

> >

> > Oh my, what stories and what a rollar coaster ride! Just a bit of

> info,

> > Patty couldn't have any milk at all what whatsoever for years. She

> also couldn't

> > have soy or products like that. She was on some prescription

> formula that I

> > forget the name. Probably doesn't matter as that was 21 years

> ago. She also

> > outgrew her allergies for the most part.

> >

> > Sorry to hear about the drive by home visit. I am wishing she is

> home for

> > one of the best birthday presents there could be for you.

> >

> > Always wishing you all the best.

> >

> >

> > Bonnie, Mom to Kris 23, Patty CHARGE 21, and wife to

> >

> >

> >

[Guest guest]

Lesley,

What great news that Amelie is home!!! I can imagine you're on edge and

exhausted, but hopefully having her home with you will bring some peace to all

of you. Hope you are settled in soon and that she thrives from being in her own

environment and having her sisters close by.

Hugs to you,

, mom to (4)

---------------------------------

Yahoo! Photos

Ring in the New Year with Photo Calendars. Add photos, events, holidays,

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[Guest guest]

Lesley-

Gee whiz. It seems like there's no easy place right now. Hospital has it's

worries and frustrations, but so does home. I hope it all gets sorted out

and you and the rest get some relief. Good that Amelie is oblivious and

moving right along. If someone's gotta be cranky and tired, it's better

that it's you...

Hugs

Michele W

Aubrie's mom 8 yrs