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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.

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25 Responses to “Here still.”

  • Alison (141 comments.):

    You know I don’t accept any of your apologies, don’t you?
    You have every right to say everything you are saying in this post and I refuse to let you apologise for it.
    Nothing actually helpful to say – sorry.

    xxx

  • Darnonymous (26 comments.):

    Oh that is just f***ed! Voodooing postitive vibes your way (wish there was more we could do to help though)!

  • MidLifeMama (22 comments.):

    No need to apologize to us, your readers who sit here VERY grateful that we have children who are well and have not had to be hospitalized once other than at birth. We are the one’s who are sorry, sorry that you and Ivy and the whole family have to go through this every.single.time. It is ridiculous. It is almost incompetent on the part of the doctors. Ivy’s well being isn’t the responsibility of just one doctor. Those night shift doctors are just wrong. You have the right to be aggravated and irritated. I hope you get it figured out sooner rather than later.

  • Fe (46 comments.):

    Unbelievable!! This is happening WAY too often. I cannot believe that you are having to go through this … it’s just cruel.

    (((((((hugs)))))))

    xoxoxox

  • Tamsyn (17 comments.):

    You have every right to be tired and cranky. Ivy seems like an absolute trooper, but I hope they get it all sorted for you soon.

  • trish (516 comments.):

    I second what Fe said.UNBELIEVABLE & CRUEL.

  • Raegan (6 comments.):

    You are a stronger women than me. I cried just reading what Ivy is having to deal with. She is so young. It’s just not fair. You vent as much as you need to anyone in your position would. You deserve a medal xxx

  • Seraphim (25 comments.):

    Your stoicism is amazing! And don’t apologise! x

  • Lightening (53 comments.):

    {{{HUGS}}} Tiff. I’m so sorry the system is letting you down and wish there was more I could do.

  • Brenda (45 comments.):

    No need to apologise Tiff. You are entitled to be Ms CrankyPants. Hugs to you my friend.

  • I am with Fe and Trish – Unbelievable and Cruel! You would think the paed would know better by now *sigh*

    Big Hugs to all of you xoxox

  • shygirl:

    We just went through two months of hospital visits, and juggling kids between grandparents. Very hard. We also learned that the squeaky wheel is the one that is paid attention to. That it is good to tell everyone, nurses/doctors/liasons/etc. and hopefully SOMEONE will figure it out. Keep squeaking,Tiff.

  • Jennette:

    You don’t have to say sorry to us for what you typed. Of course you are feeling as you are. I too am so angry on Ivy’s behalf, on yours. How can it be that this happens AGAIN? I really am so angry and wish I could fix it. Oh Tiff I’m so very sorry.
    Hugs and hope from Jennette

  • peskypixies (99 comments.):

    AAAAAAAAARRRRRRRRRRRGGGGGGGHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!

    i can’t believe that doctors can be so bloody stupid!!!

    hoping you get some action SOON.

    massive hugs

  • jeanie (171 comments.):

    Oh darl – that is just tooo frustrating.

    Is there any way of them writing on the records in front of you?

    Don’t be sorry – we are sorry that you are going through it.

  • Ali (45 comments.):

    I agree with Fe. This is just ridiculous. You have every right to be frustrated and fed up. Unbelievable that nobody seems to be looking at the bigger long term picture in all their infinite white-coated wisdom. So sorry that you and poor Ivy are going through this once again.

  • SquiggleMum (28 comments.):

    You are still there, we are still praying. xx

  • Sunny Road Mum (51 comments.):

    Arrrgh!!! That sucks. I’m so sorry you have to keep dealing with their incompetence. :(

  • Sarah:

    Man, I can just see that brick wall Tiff. Negative, no. Realistic, yes. How many times can they do this to Ivy, before they cotton on????? I am sorry that you all have to go through this xoxo

  • katef (193 comments.):

    I’m going to do a Zoe and shout and scream and stamp my foot… ‘not fair not fair not fair’…. if only it would help.
    Thinking of you all….

  • Jeanette (275 comments.):

    I’d be so very frustrated!!

  • Veronica (102 comments.):

    One great big f*ck up it seems. Sorry.

  • Rach (24 comments.):

    Oh your poor loves. We a big mess. Why can’t they get their act together? Its not that hard, really. xxx

  • lceel (354 comments.):

    Wait a minute. The Paed is in Sydney? There are no phones in Sydney? This person is incommunicado while in Sydney? No one there can call and ask the fucker what he want done?

    Unbelievable. If I were you, I would sue. I would print out every blog post for the last two years and take them to court as evidence against the Stupid National Healthcare System and its incompetent administrators.

  • Kathleen (51 comments.):

    Tiff – Have those idiots ever heard of phones to call this paed. I’m sure they have a cell phone number for him.

    Have they done any type of tests to see what Ivy is resistant too in the way of meds. Sounds like she has a resistance to the meds they are using presently if this keeps coming back.

    We do these tests to see what meds our HIV patients are resistant to and which might help. Surely they could do something similar for Ivy.

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