Eilish update

February 23, 2004

- OMG - I can't believe their attitude. They are awful! I will HOPE

that you get home ASAP!!!!!!! I know how the USA does things but not over

there.

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov

February 24, 2004

Hi everyone,

I can truly say this is the admission from hell. So many things went

wrong its all swimming in my head. Firstly Eilish and I have spent 14

days in a bay with 10 other kids. None of them had cf but the noise was

the same. Then two 7 foot strips of tiles fell of the bathroom wall and

onto Eilish's foot - not hurt. Had a meeting with the head of nursing

who printed me of the Cf Protocol which states that cfers are not to be

given a separate room unless there is other cfers in the ward who have

PA. So we got no where there. Oh there is so much more my heads

spinning. We have told them we will now have all our admission in a

hospital closer to our home. It doesn't;t have a cf centre attached but

she's only there for IV's, we will still attend the clinic at the other

place. I had so many times where all I could do was cry with the

frustration of it all. I know we could have taken her home but she is

on the eradication of PA programme and that would not have benefited

Eilish. Then this morning two cf patients who are category 5 (PA multi

resistant) were brought into the bay for review which meant just for the

day. We then got the infection control people involved who said as long

as they were as far apart as possible and didn't play together all would

be well. So I took her out and spent the day walking the streets just

to keep her safe. I could tell by the way the staff treated me that we

are now labelled trouble makers as they were always on the defensive and

cold to us. Anyway tomorrow she is home and this nightmare finishes.

(Australia)

February 24, 2004

You GO girl! Be the troublemaker! Nothing changes without

troublemakers! Don't feel in the least bit bad about fighting for

the health and happiness of your child!

-- In cfparents , " bev " <bevd@h...> wrote:

>

> Oh my GOSH!!! , that is terrible!!!

> I am so glad your going home now. I had no idea. ....Thank heavens

you have

> another hospital to go with her another time. Like you said. you

can see the

> clinic BUT they admission can be closer & one you will be treated

well at. I

> am VERY surprised the doctor didn't get upset . .....It does make a

> difference to have them together like that. I am so sorry you had

to go thru

> this.

> I hope she stays well here on .

>

> LOVE & HUGS, to you all

>

> GrandmomBEV

>

> Eilish update

>

> Hi everyone,

>

> I can truly say this is the admission from hell. So many things

went

> wrong its all swimming in my head. Firstly Eilish and I have spent

14

> days in a bay with 10 other kids. None of them had cf but the noise

was

> the same. Then two 7 foot strips of tiles fell of the bathroom

wall and

> onto Eilish's foot - not hurt. Had a meeting with the head of

nursing

> who printed me of the Cf Protocol which states that cfers are not

to be

> given a separate room unless there is other cfers in the ward who

have

> PA. So we got no where there. Oh there is so much more my heads

> spinning. We have told them we will now have all our admission in a

> hospital closer to our home. It doesn't;t have a cf centre

attached but

> she's only there for IV's, we will still attend the clinic at the

other

> place. I had so many times where all I could do was cry with the

> frustration of it all. I know we could have taken her home but she

is

> on the eradication of PA programme and that would not have benefited

> Eilish. Then this morning two cf patients who are category 5 (PA

multi

> resistant) were brought into the bay for review which meant just

for the

> day. We then got the infection control people involved who said as

long

> as they were as far apart as possible and didn't play together all

would

> be well. So I took her out and spent the day walking the streets

just

> to keep her safe. I could tell by the way the staff treated me

that we

> are now labelled trouble makers as they were always on the

defensive and

> cold to us. Anyway tomorrow she is home and this nightmare

finishes.

>

> (Australia)

>

February 24, 2004

Dear ,

I am so sorry that this admission has been so bad. I would have taken her out

too if people with multi resistant PA were in the same bay!!!!!! Unbelievable!

You stay tough on them about all things! Good thing for them to be on the

defensive too! They won't mess up!!!!

Can you get in touch with whomever makes up the protocol and explain the

concerns that you have when Eilish has to be hospitalized for so long with all

those sick kiddos?