We’ve been here for three days now.

I really didn’t have to fight at all.

The paed basically took everything out of my hands and made the decision for me.

I know I want the best of all worlds.

Equality -

to be informed

to play a part in decision making

but

somedays

I just want someone else to make the call, you know?

I want to be able to say

‘the doctor said she had to come into hospital’.

I can’t explain the mixed feelings that I have right now.

I’m glad she is here, that she is getting all she needs to get better

but I want to be at home too.

I miss the kids and David 

and I miss normality.

So far we have two IV antibiotics on board

and things have been quite slow to resolve.

The paed is thinking a third may need to be added.

Ivy has slept a large part of the week away -

she slept through the paed’s visit,

she slept through the transfer to the medical ward

and when she woke up

she asked

when we were going home.

She thought she was still there for IVIG!

She takes everything so well though.

There weren’t any tears.

The only thing she asked for was a shower.

How long we’ll be here is anyone’s guess.

When asked the paed suggested it would be ‘a few days’

and I suppose I know it’s his way of saying  ‘as long as it takes’.

Am I okay with that?

I think I am, I mean,

anything seems okay when Ivy isn’t crying,

when she’s not in pain

when the panic subsides.

It’s day three though,

 and by day five I am usually hospital crazy.

It’s Monday tomorrow

and so I’d say we’ve made it without a hospital admission.

Once her heart rate came down to an acceptable number I knew (hoped) we would.

The thing is her ears are still gross, her temp is up and down

and the Erythromycin has played terrible havoc with her system

and so

she has blisters on blisters,

an upset gut,

and is generally just miserable.

Her cortisol needs are up and so we have had to push her Prednisone up too

and that is a whole other set of issues, right there.

I’m wondering how long she can live like this before it really starts to affect her soul.

I’m wondering why,

after twelve months of hearing that oral antibiotics don’t do anything any more,

we have just finished a course of oral antibiotics.

How could the paed think that it would be enough?

Tomorrow is IVIG day.

I’m looking forward to it and loathing it all at once.

Wishing it away.

I know that the Intragam will give her the boost she needs,

that her body will not have to work so hard to try to heal itself.

I know that it will give her the best chance at not picking up anything else

but

she’ll have to be accessed tomorrow

and as it stands

nobody is sure how that will go.

Access failed four times last month

and even the paed was unsure of what he was palpating

when he checked out her port site last week.

I’m scared.

I bet Ivy is too.

The stress of advocating for Ivy is great.

I don’t care how sorry for myself that makes me sound.

It is.

Being vigilant and fighting

when it is something

I really would rather run from -

it’s emotionally exhausting.

Making sure the infusion runs smoothly.

Worrying about whether the doctor turns up

waiting

feeling angry when he doesn’t

having to ask the nurses to call him

chasing him to get answers I need.

It’s awful.

On top of all that, I need to establish

what we are going to do.

The EES runs out tonight.

She has one more dose left, with no repeats.

My feeling is, without any coverage, things will go downhill very quickly from there.

I joke around and say that I will be taking my machete  and my stomping boots

and that I am taking along extra gripper needles and anyone who hurts my baby, will be accessed within an inch of their lives

but the truth is…

the truth is

I just don’t know…

I won’t do her justice,

that’s what it is.

I often feel as though I am  not a strong enough person

to  advocate adequately for this girl, who is in my care, who I love more than life.

I know what she needs

but I often don’t know how to get those things for her

without upsetting the natural order of things.

It’s Monday tomorrow,

so I’d better figure it out -

fast.

It’s comforting,

the nest.

It has been a tradition in our house.

Each of the kids, in their younger years

and still sometimes now,

if they’re hurt

or sad

or sick

we build them a nest.

Pillows and blankets,

solace and warmth

fashioned into circular swirls of support

all on the the floor

beside the place where the home parent is.

Sometimes it’s on the lounge.

Sometimes built up on the kitchen table

but always the same  -

a tangle of  textiles,

and love.

At times, food and fluids are placed within the nest, along with the mini dvd player and toys,

there are always lots of toys.

The nest is mostly a solitary place.

Time for the little bird to mend

but sometimes others come to sit

or snuggle

or watch

or comfort.

It’s something we’ve always done

and something they’ve always loved

and in some small way

I like to think

it helps them to heal.

Two weeks and two  days after the last infusion of IVIG

Ivy is sick.

It’s not surprising, really, considering she didn’t get the whole dosage of the Intragam P

Two weeks and two days without IV antibiotics and both of her ears are discharging.

Growth: Staph and Pseudomonas.

The staph is just your garden variety though

and so the paed

has decided he will trial her on our old friend Erythromycin.

I’m not sure whether to laugh or cry.

Part of me lives in hope that the oral antibiotics will be enough,

that we can avoid the hospital and make it through the rest of the week.

Then it will be IVIG time again.

Plus the paed is off to Sydney.

Plus David is running training.

So next week would be a much better week for Ivy to fall in a heap, all round, it seems.

Part of me wants to be thankful that it is only staph A

and not the dreaded multi resistant staph that plagued us last May, June and July (okay and parts of August and November too)

but

another part of me wants to throw my hands up in horror.

Staph!

Again!

Pseudomonas!

Again!

It’s only been two weeks and two days!

Also;

(and I hate to be the pessimistic one in this relationship)

I don’t think the orals will do much to help Ivy, we are long past that

and if the EES helps with the destruction of Staph, we are just making way for the Pseudomonas to take hold.

Pseudomonas and Ivy have a long history together.

That nasty little bug makes Ivy acutely unwell,

very quickly

and

it gets into other places

like  the lungs and  her eyes.

I suppose you could say the Staph is our friend, right now.

It’s making it almost impossible for the Psuedomonas to take hold.

Staph loves oxygen

Pseudomonas loathes it.

Bacteria 101 at its finest.

The fact that the Pseudomonas is there at all though, is just not a good sign for the girl

and if I was anything worth my salt

I would get back on the phone with the doctor and tell him

that I think

that IV antibiotics are the only thing that will clear this new infection

or old infection, revamped.

Who knows.

The other problem is Ivy’s inability to stomach oral antibiotics…

I could go on and on but it all seems so overwhelming right now

and stressful

and frustrating

and repetitive.

The sad thing is,

I think it will mean ballet is out for the girl

and pre school too

and

for this week, at least,

we will be lounge dwellers

once more.