Re: Whens my trauma going to end !

[Guest guest]

Lesley-

Is there no way to get things moving more quickly?? This is ridiculous. I

could truly feel your weariness in your post.

My only thought of hope is that the manual will give you and her drs some

needed information that will help in getting to the bottom of things.

Wishing some rest and peace-of-mind... find yourself a moment to just let go

of the weariness and frustration...

Michele W

[Guest guest]

Lesley,

So sorry to hear about yet another delay! I can't believe the way things are

going for Amelie...

Hope you get some good news soon.

Love,

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

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

[Guest guest]

Lesley,

Tonight is a night for prayer time. For Amelie, , Eva, J.D., for all

our children.

Love, mercy and protection for the children; guidance and wisdom for the

care givers;

Peace and rest for the parents, and families.

[Guest guest]

Hugs Lesley!!

I so feel for you and I hope (really hope) things look up for you.

Having your child in the hospital can be very stressful so when

things like this happen you just want to yell!!! I remember when Eva

was in the NICU and they wanted to do things and they get pushed

back for one reason or anther it was very frustrating.

I will keep saying a prayer for you and Amelie, she is such a

sweetie and I hope it gets better.

Hugs,

Crystal and Eva (9 month charger)

>

> Amelies surgery cancelled for tomorrow, they no longer have the

slot

> to go to theatre.

>

> I could not even manage to get cross , i am just so tired worn out

> fed up, I just looked at the doctors and for once in my life said

> nothing.

>

> I know I always seem to be going on about whats happening, but

> amelies doctors well the majority are fantastic, her consultant

from

> birth who is in another hospital (lydia Bowden) she is truely

> genuine and wonderful, she always returns our calls when we are

> anxious etc etc, the new team we have been put under respiratory

on

> the heart unit, are also very good, I am just starting to think

> Amelie really is puzzling them they dont know fully what she is

> doing from day to day, and so you do get weary and fed up with

> them , then you have the lack of resources on top of everything

else.

>

> today she has started to cough a lot and secretions plus vomit ++

so

> they ordered an xray, which never got done I chased the nurse

three

> times and in the end at 5pm she said they are shut it will be

> tomorrow!

> They have taken bloods today and a MPN sample to send they then

> removed the baby out of her room, as a pracaution, so we have gone

> full circle in this unit, sunday in barrier room....... back in

with

> others monday......... back to barrier room today!!

> They said its probably a virus. and thats as far as we have got,

oh

> she has lost more weight, which is stressful.

>

> They plan to do the surgery brochoscopy back on Thursday 2

> Feb.....but dont anyone hold your breath we are not, she is bound

to

> get cancelled.

>

> Thats it for now, I dont think we will ever get home at this rate,

> and we have the dissociation to consider soon, he is waiting for

the

> ENT before we get started.

>

> bye Lesley

> My great news today my CHARGE MANUAL arrived i cant wait to get

> stuck into it, but will now doubt worry when i start to read it.

> thanks to n for sending it so quickly.

>

[Guest guest]

Lesley, Hey have the UK charge group send me to your hospital!! I

will have a " talk " with the doctors there and tell them to take

Amelie's health a little more seriously. Id tell them that Amelie is

just as important as all the others they keep putting ahead of her

for operations. This is just rediculus. If their just going to bump

her down the waiting list, why the hell wont they let you take her

home? Geeze they are mental!

Chantelle

>

> Amelies surgery cancelled for tomorrow, they no longer have the

slot

> to go to theatre.

>

> I could not even manage to get cross , i am just so tired worn out

> fed up, I just looked at the doctors and for once in my life said

> nothing.

>

> I know I always seem to be going on about whats happening, but

> amelies doctors well the majority are fantastic, her consultant

from

> birth who is in another hospital (lydia Bowden) she is truely

> genuine and wonderful, she always returns our calls when we are

> anxious etc etc, the new team we have been put under respiratory

on

> the heart unit, are also very good, I am just starting to think

> Amelie really is puzzling them they dont know fully what she is

> doing from day to day, and so you do get weary and fed up with

> them , then you have the lack of resources on top of everything

else.

>

> today she has started to cough a lot and secretions plus vomit ++

so

> they ordered an xray, which never got done I chased the nurse

three

> times and in the end at 5pm she said they are shut it will be

> tomorrow!

> They have taken bloods today and a MPN sample to send they then

> removed the baby out of her room, as a pracaution, so we have gone

> full circle in this unit, sunday in barrier room....... back in

with

> others monday......... back to barrier room today!!

> They said its probably a virus. and thats as far as we have got,

oh

> she has lost more weight, which is stressful.

>

> They plan to do the surgery brochoscopy back on Thursday 2

> Feb.....but dont anyone hold your breath we are not, she is bound

to

> get cancelled.

>

> Thats it for now, I dont think we will ever get home at this rate,

> and we have the dissociation to consider soon, he is waiting for

the

> ENT before we get started.

>

> bye Lesley

> My great news today my CHARGE MANUAL arrived i cant wait to get

> stuck into it, but will now doubt worry when i start to read it.

> thanks to n for sending it so quickly.

>

[Guest guest]

hmmm i dont think that sounded very convincing... let me try that

again...

I would tell those doctors that i was writing all their names down

and all the little things they did wrong and telling them that i was

writing to my local government and to the head of the medical

doctors group of UK and telling them how they are just brushing

Amelie aside like her health could afford to wait and be played

russian rulet. And then i would contact my member of parliment. Heck

girl, to hell with being confrintational. I have one thing to say to

your husband. ITS YOUR KID's HEALTH!!! YOU HAVE TO BE

CONFRUNTATIONAL IF YOU WANT HER TO GET HEALTHY!

There, i knew i had to get that out. Well if he complains about you

being confruntational i am gonna have a stirn word with him,

seriously i will. There is a time and place for confruntational and

this IS the time and place for it!!! I say so. so there.

There. Much better.

Chantelle

> >

> > Amelies surgery cancelled for tomorrow, they no longer have the

> slot

> > to go to theatre.

> >

> > I could not even manage to get cross , i am just so tired worn

out

> > fed up, I just looked at the doctors and for once in my life

said

> > nothing.

> >

> > I know I always seem to be going on about whats happening, but

> > amelies doctors well the majority are fantastic, her consultant

> from

> > birth who is in another hospital (lydia Bowden) she is truely

> > genuine and wonderful, she always returns our calls when we are

> > anxious etc etc, the new team we have been put under respiratory

> on

> > the heart unit, are also very good, I am just starting to think

> > Amelie really is puzzling them they dont know fully what she is

> > doing from day to day, and so you do get weary and fed up with

> > them , then you have the lack of resources on top of everything

> else.

> >

> > today she has started to cough a lot and secretions plus vomit

++

> so

> > they ordered an xray, which never got done I chased the nurse

> three

> > times and in the end at 5pm she said they are shut it will be

> > tomorrow!

> > They have taken bloods today and a MPN sample to send they then

> > removed the baby out of her room, as a pracaution, so we have

gone

> > full circle in this unit, sunday in barrier room....... back in

> with

> > others monday......... back to barrier room today!!

> > They said its probably a virus. and thats as far as we have got,

> oh

> > she has lost more weight, which is stressful.

> >

> > They plan to do the surgery brochoscopy back on Thursday 2

> > Feb.....but dont anyone hold your breath we are not, she is

bound

> to

> > get cancelled.

> >

> > Thats it for now, I dont think we will ever get home at this

rate,

> > and we have the dissociation to consider soon, he is waiting for

> the

> > ENT before we get started.

> >

> > bye Lesley

> > My great news today my CHARGE MANUAL arrived i cant wait to get

> > stuck into it, but will now doubt worry when i start to read it.

> > thanks to n for sending it so quickly.

> >

>

[Guest guest]

Michele

There is no quick way, especially as we are not private in the UK, if

a sick child comes into the hospital and needs the theatre/ICU bed

then you get cancelled, and you feel guilty complaining because the

night Amelie had her arrests she may have cancelled someone elses bed

so you see its a knock on effect, its got to be down to luck, and were

not getting any!

Youre right when you say you can feel my weariness, Its genuinely

there i feel low and fed up and frustrated but my anger has

disappeared, I just want closure to one year of reflux and feeding

issues that have a knock on effect with her lungs etc like so many

charge kids before her, I feel helpless. Darren has gone every night

to the hospital, as well as days for 6 weeks solid so I can catch up

with kids housework and homework, we have not sat and properly spoke

or ate a meal together, and so thats also making me feel sad, i miss

our evenings when the kids are asleep and chatting, glass of wine,

just the norms in life.

I am sure we will get there i just cant see the light again it keeps

blowing out on me!!

The other problem i have is i am a jolly extravert, and so the minute

i dont feel up to having a laugh and joke, people spot it quickly and

pester me 'whats wrong etc etc, and that bugs me too, we extraverts

are allowed to be quiet once in a while, but my friends worry when i

go quiet but i just want to be left alone for quiet time and

reflection, do you know what i mean?

I will probably bounce back tomorrow, with my ward round update, or

Amelie will gain 20lbs!!! or something crazy like that,

but thanks anyway to you all for listening. role on next Thursday now

and please god dont send any sick kids in the day before!

Lesleyx

>

> Lesley-

> Is there no way to get things moving more quickly?? This is

ridiculous. I

> could truly feel your weariness in your post.

>

> My only thought of hope is that the manual will give you and her drs

some

> needed information that will help in getting to the bottom of things.

>

> Wishing some rest and peace-of-mind... find yourself a moment to

just let go

> of the weariness and frustration...

>

> Michele W

>

[Guest guest]

I know Chantelle, it is frustrating, but she cant come home I asked

today, they have to make sure she isnt aspirating the bile and

vomits because she has a poor swallow, and i suppose its in her best

interests her lungs dont get poorly again after the last episodes,

becasue she needs to be strong for the big operation on her tummy,

they also must be fed up not getting things done with her, i think

thats why i didnt rant today, its out of their hands too in a way!

but thanks anyhow for your concerns love Lesley

> >

> > Amelies surgery cancelled for tomorrow, they no longer have the

> slot

> > to go to theatre.

> >

> > I could not even manage to get cross , i am just so tired worn

out

> > fed up, I just looked at the doctors and for once in my life

said

> > nothing.

> >

> > I know I always seem to be going on about whats happening, but

> > amelies doctors well the majority are fantastic, her consultant

> from

> > birth who is in another hospital (lydia Bowden) she is truely

> > genuine and wonderful, she always returns our calls when we are

> > anxious etc etc, the new team we have been put under respiratory

> on

> > the heart unit, are also very good, I am just starting to think

> > Amelie really is puzzling them they dont know fully what she is

> > doing from day to day, and so you do get weary and fed up with

> > them , then you have the lack of resources on top of everything

> else.

> >

> > today she has started to cough a lot and secretions plus vomit

++

> so

> > they ordered an xray, which never got done I chased the nurse

> three

> > times and in the end at 5pm she said they are shut it will be

> > tomorrow!

> > They have taken bloods today and a MPN sample to send they then

> > removed the baby out of her room, as a pracaution, so we have

gone

> > full circle in this unit, sunday in barrier room....... back in

> with

> > others monday......... back to barrier room today!!

> > They said its probably a virus. and thats as far as we have got,

> oh

> > she has lost more weight, which is stressful.

> >

> > They plan to do the surgery brochoscopy back on Thursday 2

> > Feb.....but dont anyone hold your breath we are not, she is

bound

> to

> > get cancelled.

> >

> > Thats it for now, I dont think we will ever get home at this

rate,

> > and we have the dissociation to consider soon, he is waiting for

> the

> > ENT before we get started.

> >

> > bye Lesley

> > My great news today my CHARGE MANUAL arrived i cant wait to get

> > stuck into it, but will now doubt worry when i start to read it.

> > thanks to n for sending it so quickly.

> >

>

[Guest guest]

Well said....i could do with you at the next ward round !

> > >

> > > Amelies surgery cancelled for tomorrow, they no longer have

the

> > slot

> > > to go to theatre.

> > >

> > > I could not even manage to get cross , i am just so tired worn

> out

> > > fed up, I just looked at the doctors and for once in my life

> said

> > > nothing.

> > >

> > > I know I always seem to be going on about whats happening, but

> > > amelies doctors well the majority are fantastic, her

consultant

> > from

> > > birth who is in another hospital (lydia Bowden) she is truely

> > > genuine and wonderful, she always returns our calls when we

are

> > > anxious etc etc, the new team we have been put under

respiratory

> > on

> > > the heart unit, are also very good, I am just starting to

think

> > > Amelie really is puzzling them they dont know fully what she

is

> > > doing from day to day, and so you do get weary and fed up with

> > > them , then you have the lack of resources on top of

everything

> > else.

> > >

> > > today she has started to cough a lot and secretions plus vomit

> ++

> > so

> > > they ordered an xray, which never got done I chased the nurse

> > three

> > > times and in the end at 5pm she said they are shut it will be

> > > tomorrow!

> > > They have taken bloods today and a MPN sample to send they

then

> > > removed the baby out of her room, as a pracaution, so we have

> gone

> > > full circle in this unit, sunday in barrier room....... back

in

> > with

> > > others monday......... back to barrier room today!!

> > > They said its probably a virus. and thats as far as we have

got,

> > oh

> > > she has lost more weight, which is stressful.

> > >

> > > They plan to do the surgery brochoscopy back on Thursday 2

> > > Feb.....but dont anyone hold your breath we are not, she is

> bound

> > to

> > > get cancelled.

> > >

> > > Thats it for now, I dont think we will ever get home at this

> rate,

> > > and we have the dissociation to consider soon, he is waiting

for

> > the

> > > ENT before we get started.

> > >

> > > bye Lesley

> > > My great news today my CHARGE MANUAL arrived i cant wait to

get

> > > stuck into it, but will now doubt worry when i start to read

it.

> > > thanks to n for sending it so quickly.

> > >

> >

>

[Guest guest]

:)you will find some good doctors around i never thought it posible but they are

out there just have to look real hard you know i had this feeling that ti would

be cancled coz ive had this befor to one time i think i was even on premed and

they canceled me so mum has said and aparently i wacked grandma that was just

premed or soemting coz i usulay never let her go lol ancd if the surgery is not

done in feb im not going to let her be 80 coz she prays so hard for me and stuff

gets done oh well hugs ellen who knows graNdma will be 80 wether surgery is on

or not lol

>

> Amelies surgery cancelled for tomorrow, they no longer have the slot

> to go to theatre.

>

> I could not even manage to get cross , i am just so tired worn out

> fed up, I just looked at the doctors and for once in my life said

> nothing.

>

> I know I always seem to be going on about whats happening, but

> amelies doctors well the majority are fantastic, her consultant from

> birth who is in another hospital (lydia Bowden) she is truely

> genuine and wonderful, she always returns our calls when we are

> anxious etc etc, the new team we have been put under respiratory on

> the heart unit, are also very good, I am just starting to think

> Amelie really is puzzling them they dont know fully what she is

> doing from day to day, and so you do get weary and fed up with

> them , then you have the lack of resources on top of everything else.

>

> today she has started to cough a lot and secretions plus vomit ++ so

> they ordered an xray, which never got done I chased the nurse three

> times and in the end at 5pm she said they are shut it will be

> tomorrow!

> They have taken bloods today and a MPN sample to send they then

> removed the baby out of her room, as a pracaution, so we have gone

> full circle in this unit, sunday in barrier room....... back in with

> others monday......... back to barrier room today!!

> They said its probably a virus. and thats as far as we have got, oh

> she has lost more weight, which is stressful.

>

> They plan to do the surgery brochoscopy back on Thursday 2

> Feb.....but dont anyone hold your breath we are not, she is bound to

> get cancelled.

>

> Thats it for now, I dont think we will ever get home at this rate,

> and we have the dissociation to consider soon, he is waiting for the

> ENT before we get started.

>

> bye Lesley

> My great news today my CHARGE MANUAL arrived i cant wait to get

> stuck into it, but will now doubt worry when i start to read it.

> thanks to n for sending it so quickly.

>

[Guest guest]

michlle you and aubrie are sooooo lucky you dont have to experience

this stuff that so many of us have experienced and no its very hard

to make things quick oh well hugs ellen

>

> Lesley-

> Is there no way to get things moving more quickly?? This is

ridiculous. I

> could truly feel your weariness in your post.

>

> My only thought of hope is that the manual will give you and her

drs some

> needed information that will help in getting to the bottom of

things.

>

> Wishing some rest and peace-of-mind... find yourself a moment to

just let go

> of the weariness and frustration...

>

> Michele W

>

[Guest guest]

LInda,

lovely.

pam

[Guest guest]

lesly and michelle same over here in aus im lucky im a private

patient but ive still had my six hour waits in ane going blue in the

face and stuff like that and surgeries canceld coz no icu bed s the

last surgery they were going to cancle it when i was in now that was

a trauma coz was in and ready for the op and also if i didnt have

the op then i might not be able to have it in kids as i was in a

transfer to adults teams i think its all the same all over the world

my uncle says so acutaly mums brother hes a age care nurse and he

travels to give lecture hes a profesor doctor at uni and he has said

thsi is the same all over every where hes been hes seen this stuff

so really we arent the only ones coz according to him its world wide

and if you find his book pic it up and read it its caleld dementia

and well if you read it lol you wil see a bit of my family coming

otu in me lol

>

> Michele

>

> There is no quick way, especially as we are not private in the UK,

if

> a sick child comes into the hospital and needs the theatre/ICU bed

> then you get cancelled, and you feel guilty complaining because

the

> night Amelie had her arrests she may have cancelled someone elses

bed

> so you see its a knock on effect, its got to be down to luck, and

were

> not getting any!

>

> Youre right when you say you can feel my weariness, Its genuinely

> there i feel low and fed up and frustrated but my anger has

> disappeared, I just want closure to one year of reflux and feeding

> issues that have a knock on effect with her lungs etc like so many

> charge kids before her, I feel helpless. Darren has gone every

night

> to the hospital, as well as days for 6 weeks solid so I can catch

up

> with kids housework and homework, we have not sat and properly

spoke

> or ate a meal together, and so thats also making me feel sad, i

miss

> our evenings when the kids are asleep and chatting, glass of wine,

> just the norms in life.

>

> I am sure we will get there i just cant see the light again it

keeps

> blowing out on me!!

>

> The other problem i have is i am a jolly extravert, and so the

minute

> i dont feel up to having a laugh and joke, people spot it quickly

and

> pester me 'whats wrong etc etc, and that bugs me too, we

extraverts

> are allowed to be quiet once in a while, but my friends worry when

i

> go quiet but i just want to be left alone for quiet time and

> reflection, do you know what i mean?

>

> I will probably bounce back tomorrow, with my ward round update,

or

> Amelie will gain 20lbs!!! or something crazy like that,

>

> but thanks anyway to you all for listening. role on next Thursday

now

> and please god dont send any sick kids in the day before!

>

> Lesleyx

>

>

>

> >

> > Lesley-

> > Is there no way to get things moving more quickly?? This is

> ridiculous. I

> > could truly feel your weariness in your post.

> >

> > My only thought of hope is that the manual will give you and her

drs

> some

> > needed information that will help in getting to the bottom of

things.

> >

> > Wishing some rest and peace-of-mind... find yourself a moment to

> just let go

> > of the weariness and frustration...

> >

> > Michele W

> >

>

[Guest guest]

lol i know my paed was fed up a number of times she got past telling

em when id go home itd be jsut soon as we posibly can hugs ellen---

In CHARGE , " Lesley Chan " <lesleychan@h...> wrote:

>

> I know Chantelle, it is frustrating, but she cant come home I

asked

> today, they have to make sure she isnt aspirating the bile and

> vomits because she has a poor swallow, and i suppose its in her

best

> interests her lungs dont get poorly again after the last episodes,

> becasue she needs to be strong for the big operation on her tummy,

> they also must be fed up not getting things done with her, i think

> thats why i didnt rant today, its out of their hands too in a way!

> but thanks anyhow for your concerns love Lesley

>

>

>

>

>

>

> > >

> > > Amelies surgery cancelled for tomorrow, they no longer have

the

> > slot

> > > to go to theatre.

> > >

> > > I could not even manage to get cross , i am just so tired worn

> out

> > > fed up, I just looked at the doctors and for once in my life

> said

> > > nothing.

> > >

> > > I know I always seem to be going on about whats happening, but

> > > amelies doctors well the majority are fantastic, her

consultant

> > from

> > > birth who is in another hospital (lydia Bowden) she is truely

> > > genuine and wonderful, she always returns our calls when we

are

> > > anxious etc etc, the new team we have been put under

respiratory

> > on

> > > the heart unit, are also very good, I am just starting to

think

> > > Amelie really is puzzling them they dont know fully what she

is

> > > doing from day to day, and so you do get weary and fed up with

> > > them , then you have the lack of resources on top of

everything

> > else.

> > >

> > > today she has started to cough a lot and secretions plus vomit

> ++

> > so

> > > they ordered an xray, which never got done I chased the nurse

> > three

> > > times and in the end at 5pm she said they are shut it will be

> > > tomorrow!

> > > They have taken bloods today and a MPN sample to send they

then

> > > removed the baby out of her room, as a pracaution, so we have

> gone

> > > full circle in this unit, sunday in barrier room....... back

in

> > with

> > > others monday......... back to barrier room today!!

> > > They said its probably a virus. and thats as far as we have

got,

> > oh

> > > she has lost more weight, which is stressful.

> > >

> > > They plan to do the surgery brochoscopy back on Thursday 2

> > > Feb.....but dont anyone hold your breath we are not, she is

> bound

> > to

> > > get cancelled.

> > >

> > > Thats it for now, I dont think we will ever get home at this

> rate,

> > > and we have the dissociation to consider soon, he is waiting

for

> > the

> > > ENT before we get started.

> > >

> > > bye Lesley

> > > My great news today my CHARGE MANUAL arrived i cant wait to

get

> > > stuck into it, but will now doubt worry when i start to read

it.

> > > thanks to n for sending it so quickly.

> > >

> >

>

[Guest guest]

me to lol id kick a few into starting

> > > >

> > > > Amelies surgery cancelled for tomorrow, they no longer have

> the

> > > slot

> > > > to go to theatre.

> > > >

> > > > I could not even manage to get cross , i am just so tired

worn

> > out

> > > > fed up, I just looked at the doctors and for once in my life

> > said

> > > > nothing.

> > > >

> > > > I know I always seem to be going on about whats happening,

but

> > > > amelies doctors well the majority are fantastic, her

> consultant

> > > from

> > > > birth who is in another hospital (lydia Bowden) she is

truely

> > > > genuine and wonderful, she always returns our calls when we

> are

> > > > anxious etc etc, the new team we have been put under

> respiratory

> > > on

> > > > the heart unit, are also very good, I am just starting to

> think

> > > > Amelie really is puzzling them they dont know fully what she

> is

> > > > doing from day to day, and so you do get weary and fed up

with

> > > > them , then you have the lack of resources on top of

> everything

> > > else.

> > > >

> > > > today she has started to cough a lot and secretions plus

vomit

> > ++

> > > so

> > > > they ordered an xray, which never got done I chased the

nurse

> > > three

> > > > times and in the end at 5pm she said they are shut it will be

> > > > tomorrow!

> > > > They have taken bloods today and a MPN sample to send they

> then

> > > > removed the baby out of her room, as a pracaution, so we

have

> > gone

> > > > full circle in this unit, sunday in barrier room....... back

> in

> > > with

> > > > others monday......... back to barrier room today!!

> > > > They said its probably a virus. and thats as far as we have

> got,

> > > oh

> > > > she has lost more weight, which is stressful.

> > > >

> > > > They plan to do the surgery brochoscopy back on Thursday 2

> > > > Feb.....but dont anyone hold your breath we are not, she is

> > bound

> > > to

> > > > get cancelled.

> > > >

> > > > Thats it for now, I dont think we will ever get home at this

> > rate,

> > > > and we have the dissociation to consider soon, he is waiting

> for

> > > the

> > > > ENT before we get started.

> > > >

> > > > bye Lesley

> > > > My great news today my CHARGE MANUAL arrived i cant wait to

> get

> > > > stuck into it, but will now doubt worry when i start to read

> it.

> > > > thanks to n for sending it so quickly.

> > > >

> > >

> >

>