Actually, we are not at home, we are on the road this weekend.

On our way to Sydney for a family gathering and for some IKEA therapy.

Ivy is good.

She’s connected up, through her port ,to a continuous slow infusion of antibiotics that she has had no reaction to.

She looks beautiful and healthy.

Our grand plan of making over Ivy and Noah’s bedroom for their birthday, which is in nine *very* short days,

has now been pushed into overdrive.

We need to get organised -

thus the trip to my new favourite store.

I just wanted to let you  all know we’re home

and to leave you with some photos of the girl and her hospitalmade  homemade mermaid ( I refuse to call hospital home - even though she does sometimes).

Yesterday they did the first push of her antibiotic, instead of through the drip.

Yesterday, minutes afterwards, Ivy had an allergic reaction.

A big one.

The paed was contacted and we were told we couldn’t go home;

I was so angry.

We had been mucked around beyond belief and I just wanted to go.

They infused the second dose slowly

and she had another reaction

and I felt awful for being so angry

because really, we were lucky.

If I had taken her home and pushed the antibiotic, she could have had a severe reaction

and we may not have made it to the hospital on time.

As it was, the reaction was not that bad because it was infused slowly

but it was still enough to scare me.

Today we’ve been told we need to have another night in while they trial a new antibiotic.

So far so good.

The paed gave us a couple of hours gate leave this morning and I took the girl out for her first pair of ballet shoes…

okay

and a frilly tutu skirt and tights as well.

She’s the cutest little ballerina this side of the hospital.

So, it’s  day eight and I am tired and weepy but I am also incredibly thankful

and because I’m feeling that way and am considering all of my blessings this afternoon

I thought I’d share some photos with you,

 the people who I am grateful for.

 He loves hats. Gorgeous grinny boy.

 Pretty in pink.

She’s very puffy from all the steroids they’ve used to stabilise her but as a very good friend said, she’s still our Ivy.

He loves her and stuck by her side for the whole night.

Noah busting some moves.

I’m sorry these two are blurry but I was just aiming the camera above my head and shooting

into the middle of the kindy mosh pit.

I was lucky to get anything at all, really

because there was so much movement

and maybe because I was laughing so hard as well.

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.

While discharge was not obtained the paed kindly gave Ivy gate leave so that she could attend her first dance

and she sparkled.

She shone.