AMELIE CROSS INFECTION ALERT!!!!!!! OMG

[Guest guest]

Lesley,

U have the right to refuse Mondays procedures if U feel she has compromised

at all.

U can ask for prophylactic antibiotics if U chose. (if U don't feel she's

been on them too much, already).

I would also think U could put up quite a stink that she's not in a cardiac

ward. I myself would try to get her transferred if possible. (Do people sue

in the UK?)

I think I'd want to take a picture and send it to Tony ! or fax it to

him-why wait.

If this is what socialized medicine is all about-I think I want to send some

of our democrats a picture of it too.

Bumming out with U,

[Guest guest]

Hi Lesley,

Why does this not surprise me ???? It's the weekend !!!

The good old NHS, it all comes down to money or more to the point the lack

of it.

Do they have any cubicles on this other ward at all ? If so, ask for for or

rather, tell them that Amelie needs to be isloated as her immune system is

compromised.

Also, I presume Amelie will be given prophylactic antibiotics prior to the

procedure on Monday due to the risk of endocarditis. It's always better to

mention it to the anaesthetist or surgeon as if they are anything like the ones

up here it can be missed. It's something I always remind them about now with

Jack since they didn't give him any once after lithotripsy and he ended up

with staph a septecaemia

Sending huge hugs down the M6 and thinking of you all lots.

Jack sends a big hug to Amelie

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

Scotland

[Guest guest]

Right guys what do you make of this load of Cr*p

just about to swop with Darren when the nurse came in 6pm, 'pack

your bags we have to shut the ward down and move you all out to

another ward!'

The ward she is going to, i sneaked out to check it out, huge long

ward , no cubicles just kid after kid after all in a row all ages!!

Amelie has no immune system or i least i dont think she has, she

picks everything up.

We have to stay there until Monday because a member of staff phoned

in sick!!

Why cant they get bank staff in MONEY!!!!!!!!

i SHE CATCHES ANYTHING I WILL BE SO PI**ED OFF i AM ABOUT TO SNAP i

AM THAT MAD.

WHAT DO YOU MAKE OF THE NHS ?

TONY BLAIR WOULD PUT UP WITH IT WOULD HE!!

THEY MOVED HER INTO ANOTHER ROOM TWO DAYS AGO BUT AT LEAST IT WAS

STILL THE HEART WARD, NOW WERE UP THE CORRIDOR ON A GENERAL WARD

FULL CRAMMED IN LIKE SARDINES IN A CAN!

IT GOES FROM BAD TO WORSE, AND IF SHE DOES CATCH SOMETHING THEY WILL

NOT TAKE HER TO THEATRE MONDAY WILL THEY?

BY THE WAY SHE IS GOING DOWN AT 2PM MONDAY!

CROSS CROSS CROSS LESLEY, NEVER A DULL MINUTE

[Guest guest]

Loved it ,

we very rarely take anyone to court in UK, me personally i never

like to complain even if my food in a restaurant is cr*p, i say

nothing, its the way I am, but this NHS lark is starting to get to

me, poor quality food can not compare to Amelies problems.

She has been on Antibiotics since birth, Darren said when he phoned

that he made them move two kids further along to the end of the ward

he said they were older and not compromised so amelie could be

opposite the nurses station, she needs tons of suction and doesnt

cry for assistance, but I feel guilty about the other kids now!!

cant win, they have mums too I feel Cra**ier than before now.

Glad your bumming out with me!

Role on Monday, all being well then I want her out of there.

Peace lol lesley

>

> Lesley,

>

> U have the right to refuse Mondays procedures if U feel she has

compromised

> at all.

> U can ask for prophylactic antibiotics if U chose. (if U don't

feel she's

> been on them too much, already).

> I would also think U could put up quite a stink that she's not in

a cardiac

> ward. I myself would try to get her transferred if possible. (Do

people sue

> in the UK?)

>

> I think I'd want to take a picture and send it to Tony ! or fax it

to

> him-why wait.

> If this is what socialized medicine is all about-I think I want to

send some

> of our democrats a picture of it too.

> Bumming out with U,

>

>

>

>

>

>

[Guest guest]

dear Elaine

No cubicles that was my first thought,

you know about the prophylaxis, its just dawned on me, when Amelie

had her fundo in may, she looked great, then 6 days later or so, she

was rushed in with strep B positive pneumonia and a pleural

effusion,9 (mind you they did not put a chest drain in, which i

thought was standard!!) think thats spelt ok, i dont recall anyone

discussing this with us just as we handed her over at the theatre

doors OMG.

I will make sure I do so Monday, I even have to have antibiotice

cover for the Dentist and labour, and i only had a PDA , fit and

well, I better emphasise this in case they forget to do it!!

Another grey hair before monday!!

Glad you can appreciate the good old Financial NHS, when we asked

why they could not get a bank staff in they said they had no one

spare!!! rubbish!! money and coming towards the end of financial

year------ pot is dry.!!

cheers lesley

>

> Hi Lesley,

> Why does this not surprise me ???? It's the weekend !!!

> The good old NHS, it all comes down to money or more to the point

the lack

> of it.

>

> Do they have any cubicles on this other ward at all ? If so, ask

for for or

> rather, tell them that Amelie needs to be isloated as her immune

system is

> compromised.

>

> Also, I presume Amelie will be given prophylactic antibiotics

prior to the

> procedure on Monday due to the risk of endocarditis. It's always

better to

> mention it to the anaesthetist or surgeon as if they are anything

like the ones

> up here it can be missed. It's something I always remind them

about now with

> Jack since they didn't give him any once after lithotripsy and he

ended up

> with staph a septecaemia

>

> Sending huge hugs down the M6 and thinking of you all lots.

> Jack sends a big hug to Amelie

>

>

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

> Scotland

>

>

>

>

[Guest guest]

Lesley - Your biggest thing is to make sure that everyone washes their hands

every time they come up to her bed. Some germs are airborn, but most are

transferred by touch. In wards there are not sinks outside every room, so

the cue to wash is gone and people forget. Put a sign on Amelie's bed that

says. " Thank you for washing your hands before touching me or my

belongings. " and sign her name to it. Kim

> Loved it ,

>

> we very rarely take anyone to court in UK, me personally i never

> like to complain even if my food in a restaurant is cr*p, i say

> nothing, its the way I am, but this NHS lark is starting to get to

> me, poor quality food can not compare to Amelies problems.

>

> She has been on Antibiotics since birth, Darren said when he phoned

> that he made them move two kids further along to the end of the ward

> he said they were older and not compromised so amelie could be

> opposite the nurses station, she needs tons of suction and doesnt

> cry for assistance, but I feel guilty about the other kids now!!

> cant win, they have mums too I feel Cra**ier than before now.

>

> Glad your bumming out with me!

>

> Role on Monday, all being well then I want her out of there.

>

> Peace lol lesley

>

>

>

>>

>> Lesley,

>>

>> U have the right to refuse Mondays procedures if U feel she has

> compromised

>> at all.

>> U can ask for prophylactic antibiotics if U chose. (if U don't

> feel she's

>> been on them too much, already).

>> I would also think U could put up quite a stink that she's not in

> a cardiac

>> ward. I myself would try to get her transferred if possible. (Do

> people sue

>> in the UK?)

>>

>> I think I'd want to take a picture and send it to Tony ! or fax it

> to

>> him-why wait.

>> If this is what socialized medicine is all about-I think I want to

> send some

>> of our democrats a picture of it too.

>> Bumming out with U,

>>

>>

>>

>>

>>

>>

[Guest guest]

yeah do taht and if they dont let theem them not look avfter her LOL ellen

going nuts again

>

> Lesley - Your biggest thing is to make sure that everyone washes their

> hands

> every time they come up to her bed. Some germs are airborn, but most are

> transferred by touch. In wards there are not sinks outside every room, so

> the cue to wash is gone and people forget. Put a sign on Amelie's bed

> that

> says. " Thank you for washing your hands before touching me or my

> belongings. " and sign her name to it. Kim

>

>

>

>

> > Loved it ,

> >

> > we very rarely take anyone to court in UK, me personally i never

> > like to complain even if my food in a restaurant is cr*p, i say

> > nothing, its the way I am, but this NHS lark is starting to get to

> > me, poor quality food can not compare to Amelies problems.

> >

> > She has been on Antibiotics since birth, Darren said when he phoned

> > that he made them move two kids further along to the end of the ward

> > he said they were older and not compromised so amelie could be

> > opposite the nurses station, she needs tons of suction and doesnt

> > cry for assistance, but I feel guilty about the other kids now!!

> > cant win, they have mums too I feel Cra**ier than before now.

> >

> > Glad your bumming out with me!

> >

> > Role on Monday, all being well then I want her out of there.

> >

> > Peace lol lesley

> >

> >

> >

> >>

> >> Lesley,

> >>

> >> U have the right to refuse Mondays procedures if U feel she has

> > compromised

> >> at all.

> >> U can ask for prophylactic antibiotics if U chose. (if U don't

> > feel she's

> >> been on them too much, already).

> >> I would also think U could put up quite a stink that she's not in

> > a cardiac

> >> ward. I myself would try to get her transferred if possible. (Do

> > people sue

> >> in the UK?)

> >>

> >> I think I'd want to take a picture and send it to Tony ! or fax it

> > to

> >> him-why wait.

> >> If this is what socialized medicine is all about-I think I want to

> > send some

> >> of our democrats a picture of it too.

> >> Bumming out with U,

> >>

> >>

> >>

> >>

> >>

> >>

[Guest guest]

lol you cant go nuts again, because its my turn, I AM GOING NUTS

FIRST!!!!

LOL LESLEY

> > >>

> > >> Lesley,

> > >>

> > >> U have the right to refuse Mondays procedures if U feel she

has

> > > compromised

> > >> at all.

> > >> U can ask for prophylactic antibiotics if U chose. (if U don't

> > > feel she's

> > >> been on them too much, already).

> > >> I would also think U could put up quite a stink that she's

not in

> > > a cardiac

> > >> ward. I myself would try to get her transferred if possible.

(Do

> > > people sue

> > >> in the UK?)

> > >>

> > >> I think I'd want to take a picture and send it to Tony ! or

fax it

> > > to

> > >> him-why wait.

> > >> If this is what socialized medicine is all about-I think I

want to

> > > send some

> > >> of our democrats a picture of it too.

> > >> Bumming out with U,

> > >>

> > >>

> > >>

> > >>

> > >>

> > >>

[Guest guest]

LOL just came in from a swim drenched yummy rain

>

> lol you cant go nuts again, because its my turn, I AM GOING NUTS

> FIRST!!!!

>

> LOL LESLEY

>

>

>

>

> > > >>

> > > >> Lesley,

> > > >>

> > > >> U have the right to refuse Mondays procedures if U feel she

> has

> > > > compromised

> > > >> at all.

> > > >> U can ask for prophylactic antibiotics if U chose. (if U don't

> > > > feel she's

> > > >> been on them too much, already).

> > > >> I would also think U could put up quite a stink that she's

> not in

> > > > a cardiac

> > > >> ward. I myself would try to get her transferred if possible.

> (Do

> > > > people sue

> > > >> in the UK?)

> > > >>

> > > >> I think I'd want to take a picture and send it to Tony ! or

> fax it

> > > > to

> > > >> him-why wait.

> > > >> If this is what socialized medicine is all about-I think I

> want to

> > > > send some

> > > >> of our democrats a picture of it too.

> > > >> Bumming out with U,

> > > >>

> > > >>

> > > >>

> > > >>

> > > >>

> > > >>

[Guest guest]

lol do actually mean swimming, or the rain drenched you?? is it not

hot in Aus at minute?

lol love lesley

> > > > >>

> > > > >> Lesley,

> > > > >>

> > > > >> U have the right to refuse Mondays procedures if U feel

she

> > has

> > > > > compromised

> > > > >> at all.

> > > > >> U can ask for prophylactic antibiotics if U chose. (if U

don't

> > > > > feel she's

> > > > >> been on them too much, already).

> > > > >> I would also think U could put up quite a stink that she's

> > not in

> > > > > a cardiac

> > > > >> ward. I myself would try to get her transferred if

possible.

> > (Do

> > > > > people sue

> > > > >> in the UK?)

> > > > >>

> > > > >> I think I'd want to take a picture and send it to Tony !

or

> > fax it

> > > > > to

> > > > >> him-why wait.

> > > > >> If this is what socialized medicine is all about-I think I

> > want to

> > > > > send some

> > > > >> of our democrats a picture of it too.

> > > > >> Bumming out with U,

> > > > >>

> > > > >>

> > > > >>

> > > > >>

> > > > >>

> > > > >>

[Guest guest]

This all just sounds so wrong. I would start writing a log of the good and

the bad. Then I would make an appointment to talk with the hospital

administrator.

Do you know how to contact the " boss " of the ward? Not the head nurse, the

administrator.

Take notes.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Lesley-

Bulls***!!!!! I can't believe that kind of thing is happening in a country

that I thought was advanced. Is there nothing that can be done???

I'd say call Tony What's-His-Name and have him come visit your baby and see

if it makes any sense to him.

Michele W

Aubrie's mom

[Guest guest]

Michele,

i just love that word BULLS***, it sums it all up.

I think this is the problem or at least in my little opinion.

After christmas........ doom and gloom.........nothing to look

forward to........over spent at christmas.......and then wham you

check your shifts out and you've got nights..............OMG Every

nurse I come across hates nights!!!!!!

The problem is they get paid in full for 6 months at a time if off

sick.......wheres the incentive.....?????? to not throw a sicky

in........so half the hospital this month has been off sick, January

blues, and it wont affect the pay packet at the end of the

month.....so why work SAT/SUN night.......... if you can stay home

all cosey up indoors bottle of red and a chinese........

They had to close the complete heart and respiratory ward because

they phoned in sick!!!!

do you get it??

Tony Blairs children would not be treated in the NHS they would be

private!!!!

And of all the wards to put the cardiacs on we were put on a neuro

ward, I have never been so frightened in all my life, I never met a

sick child till Amelie was born, and if you read my SNOT pot last

week you would understand how sick and worried I was, now I am on

NEURO WARD I feel much worse, they are so sad, its the most

depressing thing I have ever seen.

And so now I keep thinking OMG if she ends up like this what life

will she have!!no exaggeration, they are really brain injured its

awful.

BULLS*** Lesley from sunny UK where the sun shines 24/7 never ever!!!

>

> Lesley-

> Bulls***!!!!! I can't believe that kind of thing is happening in

a country

> that I thought was advanced. Is there nothing that can be done???

>

> I'd say call Tony What's-His-Name and have him come visit your

baby and see

> if it makes any sense to him.

>

> Michele W

> Aubrie's mom

>

[Guest guest]

Lesley--

Ok, so I suppose the silver lining this time is that you can now feel

blessed that Amelie has CHARGE (in all its glory) and not whatever all the

kids on the neuro ward have.

Do I get the nursing thing?? Not a bit. And to think this is happening in

an education, relatively wealthy country. What's up with that?

You really must write a letter... or 2... or 3 to someone... the papers, TV

news, the UK-Oprah (you must have someone), etc. This is insanity. And

it's simply not right.

Michele W

[Guest guest]

think ;you should form with soem of the parents who mightr5 feel the same

way and have a parents comitte thats what mum has done it started with a

adolesent mums ward comitee then it branched otu to this long term mums one

now they never sorted out all the isues surounding us in hosp but they

certainly put their words in on a good few and they acutaly made us get a

coffee man for them for after hours which has done great not only to the

mums in ,kids but to the connecting aults and pribate hosptials to basicly

this was just a couple of mothers sick of going down to the coffee shop to

find ti shut hugs ellen

>

> Lesley--

> Ok, so I suppose the silver lining this time is that you can now feel

> blessed that Amelie has CHARGE (in all its glory) and not whatever all the

> kids on the neuro ward have.

>

> Do I get the nursing thing?? Not a bit. And to think this is happening in

> an education, relatively wealthy country. What's up with that?

>

> You really must write a letter... or 2... or 3 to someone... the papers,

> TV

> news, the UK-Oprah (you must have someone), etc. This is insanity. And

> it's simply not right.

>

> Michele W

>

>

>

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

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> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

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

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

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

>

[Guest guest]

IT is raining and it is still 28 degree celius

xoxo

>

lol do actually mean swimming, or the rain drenched you?? is it not

> hot in Aus at minute?

>

> lol love lesley

>

>

>

>> > > > >>

>> > > > >> Lesley,

>> > > > >>

>> > > > >> U have the right to refuse Mondays procedures if U feel

> she

>> > has

>> > > > > compromised

>> > > > >> at all.

>> > > > >> U can ask for prophylactic antibiotics if U chose. (if U

> don't

>> > > > > feel she's

>> > > > >> been on them too much, already).

>> > > > >> I would also think U could put up quite a stink that she's

>> > not in

>> > > > > a cardiac

>> > > > >> ward. I myself would try to get her transferred if

> possible.

>> > (Do

>> > > > > people sue

>> > > > >> in the UK?)

>> > > > >>

>> > > > >> I think I'd want to take a picture and send it to Tony !

> or

>> > fax it

>> > > > > to

>> > > > >> him-why wait.

>> > > > >> If this is what socialized medicine is all about-I think I

>> > want to

>> > > > > send some

>> > > > >> of our democrats a picture of it too.

>> > > > >> Bumming out with U,

>> > > > >>

>> > > > >>

>> > > > >>

>> > > > >>

>> > > > >>

>> > > > >>

[Guest guest]

yep same here to yum

>

> IT is raining and it is still 28 degree celius

>

> xoxo

> >

> lol do actually mean swimming, or the rain drenched you?? is it not

> > hot in Aus at minute?

> >

> > lol love lesley

> >

> >

> >

> >> > > > >>

> >> > > > >> Lesley,

> >> > > > >>

> >> > > > >> U have the right to refuse Mondays procedures if U feel

> > she

> >> > has

> >> > > > > compromised

> >> > > > >> at all.

> >> > > > >> U can ask for prophylactic antibiotics if U chose. (if U

> > don't

> >> > > > > feel she's

> >> > > > >> been on them too much, already).

> >> > > > >> I would also think U could put up quite a stink that she's

> >> > not in

> >> > > > > a cardiac

> >> > > > >> ward. I myself would try to get her transferred if

> > possible.

> >> > (Do

> >> > > > > people sue

> >> > > > >> in the UK?)

> >> > > > >>

> >> > > > >> I think I'd want to take a picture and send it to Tony !

> > or

> >> > fax it

> >> > > > > to

> >> > > > >> him-why wait.

> >> > > > >> If this is what socialized medicine is all about-I think I

> >> > want to

> >> > > > > send some

> >> > > > >> of our democrats a picture of it too.

> >> > > > >> Bumming out with U,

> >> > > > >>

> >> > > > >>

> >> > > > >>

> >> > > > >>

> >> > > > >>

> >> > > > >>