Home


About


William


Ivy and Noah


Pemphigus


Donate Blood


Dear Donor


Reviews by Tiff

Subscribe Follow me on Twitter

watch this space
Archives
Categories

Posts Tagged ‘doctors not doing their jobs’

Tired.

I’m so tired today.

We’ve been in the hospital for two days

and I want to go home.

I’m tired of doctors saying one thing to your face

and then another behind your back.

I’m tired of coming in for one thing

and ending up with a million other things thrown into the mix.

I’m tired of having no direction for the girl and her needs for days on end

and then being admonished for sitting on her condition too long at home.

I called for help last Friday.

It’s convenient that they forget that now.

I’m tired of being dictated to by doctors who do not know my daughter at all

and I’m tired of doctors who are supposed to advocate for us

but instead run away.

I’m sick of feeling as though I have no choices

and tired of feeling vulnerable

and unsure

because the doctors change the rules faster than I can draw breath.

I’m tired of all of those things.

Yes.

I’m exhausted.

Mostly though I’m tired for the girl

who can’t seem to catch a break

and who I don’t think is going to see term two out at school

when her only goal for year one was to make it to class more often

and I think she’s tired too.

The doctor blues.

I’m not sure what I’m doing

or why I am hanging onto a doctor who clearly does not want to be Ivy’s anymore.

For a long time, he has been the go to guy.

When things get bad and out of control, I have always looked to him to help make decisions

but now

he doesn’t want to.

He wants other specialists to make decisions,

that I think are his

(and those specialists don’t think they should have to decide either).

Ivy is being passed like a hot potato between doctors,

with no change in a treatment that is going absolutely nowhere.

He has never been great at helping when Ivy is acutely unwell

but for the last six months he has been worse than usual.

I feel like I have made allowances

because he’s young, with little children of his own, with a new business

and he’s popular,

he’s so popular

and run off his feet with all of the patients he sees and his on call duties for two hospitals

but

when all is said and done

this is my baby girl -

I want the best for her

and I’m not sure that he is what’s best for Ivy any more.

The thing is this;

he has known Ivy since she was six months old

he knows everything about her, inside and out

and to start again

is just

so

scary.

Aside from that,

I’m not even sure that there is anyone else.

Every other paed we have crossed paths with seems very…

overwhelmed

by Ivy’s complexities.

I’d like to sit down and talk with the paed, address the issues so we can move forward

or move on

but I’m certainly not a confident person when it comes to confrontation

and

he’s booked out until September.

Frustration.

 

Hearing test: abnormal.

Bloods: abnormal.

CT scan: pending.

Yes, still.

Number of doctors closed until the end of January 2010: too many to list.

Care factor of boonie doctor: zero.

GP’s ability to organise a hospital admission: zilch.

Ability for paediatrician to stay true to his word: nil.

Chances of Ivy having an illness free Christmas: slim

Chances of preschool child vomiting, meaning gastro has come to play…again: Oh, high, very high.

Chances of the universe giving me a break? 

You decide.

Here still.

hospitallifeweb

As you can see, Ivy is feeling loads better.

Bored even.

What you can’t see is that her ear is still  not clear.

What that means is that if  Ivy were to leave the hospital now,

without long term antibiotic coverage,

we would bounce back with a very sick girl in a matter of days.

Not a great option.

 

What you also  can’t see is the comedy of errors that has gone on here.

Yesterday the paediatrician came in

and confirmed that Infectious Diseases had given the thumbs up for Ivy to have home antibiotics again

and he suggested that if there were a long waiting list for the Out and About Program,

 it would be possible for the hospital to provide the medicine and equipment so that I could dose her at home until a spot became available

then he went to Sydney.

Later that evening the nurse came in to tell me that there had been no referral ever made for Ivy

and that they hadn’t heard from Infectious Diseases

or the Paed

or his team

and that the waiting list was huge. 

As in enormous,

 no chance of getting onto the program this week.

What’s more, was that nobody had any idea of what the paed actually wanted in respect to me taking home the meds.

They felt that unless Ivy was on the program, there was no way home antibiotics were possible.

I got upset

Ivy and I  are going crazy here (okay, maybe just me, the girl has amazing patience, where I do not )

and the nurse went to the evening shift doctors

who said it wasn’t their job to write a referral or to organise a discharge

and that it was something that the day doctors needed to do.

Yes,

except they should have done it three days ago.

So now we sit

with the paed in Sydney

and doctors who

a) have not done their job in the first instance and

b) are not likely to do their job or

c) will pretend to do their job but really won’t

because the paed is in Sydney and while he’s there

we are out of sight and out of mind.

It seems the front end never knows what the tail end is doing and so we walk in circles.

Meanwhile our family is torn apart and we are juggling children between grandmothers.

Everything is on hold.

David asked me what is stopping us from just picking her up and leaving.

Um

the simple answer to that is

doing that will ultimately hurt Ivy.

I’m pretty cross.

It’s another day in limbo, another day of being cooped up in a small room (she’s not allowed out because she’s considered infectious).

Oh, I know I should just be incredibly grateful that Ivy has this option at all

but seven days and four walls makes me snarky.

Sorry.

On top of that they are talking  just two weeks of home antibiotics.

No matter how many times we go through this it is always the same.

It’s like hitting my head against a great,

 big,

very dense brick wall.

Ivy will need at least six weeks for there to be any effect at all,

any chance of beating this.

In my opinion, of course.

Can’t they see?

Two short weeks of good health

followed by an acute relapse

five days in while she recovers

another four to get us back onto the home program they just discharged her from,

that’ll  take us to Christmas.

Yeah, I know that I sound negative

but seven days and four walls will do that too.

Sorry.