Ivy girl is tucked up beside me after another blow.

Noah in the other bed and it is SO good to be home.

Approval; denied.

Our paed is going to Sydney on Monday to do battle with the drug board, David is writing a letter to our local member of Parliament and I am licking my wounds from another round of hospital battle.

I was very upset when the news came but I have thought it through and if there were no IVIG available then we would just keep battling on, just as we have been, just as we did with Immy.

We have done it before and we can do it again.

Thank you everyone for thinking of us.

Tonight I am going to have a long shower, a hot cup of tea and a sleep in a non hospital regulation bed ie; a comfortable one.

Tomorrow, weather permitting, I am going to watch my beautiful, amazing, heroic baby girl dance in the wind and play with her brother, sisters and cousins outside in the sun.

Because tomorrow is a new day.

Ivy is so much better and I thought we might have broken free from the hospital but he has spoken to the immunologist and it looks like we might be able to get the Intragam.

Tonight.

If approval comes through.

All I’m asking is for all of you to pray, cross your fingers, chant, dance, speak to that higher power, whatever it is that you do.

Maybe just maybe this will be a day to celebrate.

We’ll know by 5pm, so it will be a double posting tonight regardless.

I know I shouldn’t get my hopes up but, well, they’re already there.

The princess hardly moved for the whole admission process, waking briefly for cannulation and then again when they swabbed her ears.

It was only me, who remained in a sleepless, helpless land that is somewhere between salvation and hell.

So, here we are, my friends.

I don’t know what to tell you.

I could regale you with stories of surgical nurses mincing around at the thought of an infectious child on their ward

oooh boogety boogety.

I could tell you about  the fear that jumped into my throat at the thought of meningococcal (it’s not, don’t worry)

or I could ask you all to tell of something good that has happened for you lately

because…

well, because I need to hear the positive.

So, indulge me…

The reason for her long delay?

The IVIG?

Denied.

Even though she said Ivy would have no problems getting the Intragam it has been denied by the Australian Blood Bank.

An appeal is taking place as I type and the paed says it’s not over

but it is.

My little girl is going to have a life of hospital admissions and illness, some chronic, some life threatening, because some guy in an ivory tower decided she could survive without this medication.

I know I said no more negative

but

man, this bites.

to see the world with innocence and vigor.

New negativity.

A jaded, bitter, watchful me seeks out the sickly and squeezes between them, hoping to filter away any airborne disease.

Inwardly, I laugh at my naivity.

Feeling defiant and wrong for being out amongst the people, for socialising, when we are supposed to be in ‘enforced isolation’.

We are only buying food.

The cupboards bare for fear of exposing anyone to anything.

Shopping these days is a luxury.

Wall watcher, wishing away the days to a time when  there is sunshine and the house will not hold us prisoner anymore.

Doctor chaser.

Too much of a nurse and not enough of a mother.

Wordless, worry.

Does she look a bit off to you?

When will the next infection hit and will we get through it without a hospital admission?

Dark thoughts of failure and exhaustion.

Doctors names as large and complicated as their egos.

Weeks when our trips to the doctor’s are our only outing.

Medication

cannulation

 putting all our eggs in the infusion basket.

Frustration

Lonliness.

I read something that said we’ll get used to this, that we will learn to take it in our stride. It won’t be as stressful as it is now.

I don’t know.

Will I ever get used to this new normal?

Ivy is sick. 

 Almost hospital worthy.

We went to the paed who said she was sick but ’stable’.

He  offered her IV antibiotics to clear up the obvious infection but it wasn’t emergent and with six other children to look after and a husband who has no more leave left, I declined.

He had nothing else for her,

No new answers and no word from the immunologist, despite leaving several messages and emails.

She is missing.

So I did the only thing I could.

I cried (silly I know, I’m usually much better at keeping my emotions to myself)

and then I left.

He called last night.

Just to see how the girl was holding out and, I guess, to see how I was too

but

still no word from the immunologist

and so we are living in limbo.

Written as part of MamaBlogga’s GWP.

(Not, not not, not bl**dy NOT)

At least;

now she has matching discharging ears, instead of just the one.

Yippee!

Oh and her snoring?

Worse than ever.

In an attempt to stop the discharge before it runs away from us (pardon the pun) we contacted the ENT doctor’s rooms, only to find them shut.

De ja vu anyone?

I am so tired of chasing these doctors, trying to have them make good on their plans for Ivy.

I think the IVIG is not going to happen this week. I feel it in my bones. It may have something to do with the fact that the paed, having promised to call to organise things, has not come good.

Typical.

Part of me just wants to wave the white flag.

I give up!

I know I’m annoying. I know it. I hate it as much as you and I surrender.

I can’t do it anymore…

and then I look at her and I know how great she can be

so I start the doctor chase again.

Ugh.

I hate myself for it.

She’s eating grapes and floating on a cloud of pethidine.

Thanking you, my friends for nursing my worry and thinking of my girl.

The paed called back and we saw him today.

The bottom line is her vaccinations did not take properly. The Ivy girl is an antibody - less, low immunity time bomb.

So; she will get the IVIG.

After all this time I feel really weird knowing that I was right. It’s like a ball in the pit of my stomach and part of me wants to laugh out loud, get right up close and scream “I told you so! You arrogant people who think you know better than a child’s mother!”  and the rest of me wants to break down and cry and then cry some more.

For all of the struggle and for the times I’ve felt crazy and the constant sickness that Ivy has had to go through while they made up their minds.

The pain, the heartache, the worry.

I want to cry because it has changed my family.

It has changed me.

My confidence is truly shredded.

Before we can go ahead with the IVIG, Ivy will have the operation.

It has been decided that on Monday Ivy will go to the hospital for IV antibiotics. She has been unwell, her ear is disgusting and she has been dizzy to the point of falling over and claiming that her eyes hurt. The paed has decided we need to get this all sorted out before Thursday.

She will have the operation on Thursday

and she will have antibiotics and cortisone afterwards to support her through the trauma.

I know, grommets and adenoids is not a big deal surgically but for Ivy it is and it is for me too.

The truth is, I am scared.

Imogen had the same operation when she was four and went home on antibiotics. A month later her tonsil abscessed and burst, making her so septic that I thought I might lose her.

I have known this operation for Ivy was coming. I consented to it six weeks ago. I have thought about it, worried about it, tried to work through my fears.

It’s kept me up at night.

Really.

I have gone through everything.

Still, I have not come to any resolution.

It still feels wrong.

I am still worried that something will happen.

Pessimistic?

Maybe but it is an unshakable thing and usually when it is my issue, I can tease it out until I get to a place I feel…comfortable at least.

What am I supposed to make of that?

Do I push those feelings down and hope that I am just being an overprotective mother, with a negative outlook on life?

Or do I listen to my gut?

Because it’s not often wrong these days.

You know what makes me crazy?

Aside from driving for two and a bit hours like a mad woman to the hospital, so we can sit and wait for an hour and a bit for our half hour slot?

It’s a doctor who doesn’t know what we have been through and who looks the pred child up and down and utters the most hated of statements to any parent of a chronically ill child…

“Well, she looks good to me”.

AAAARRRRRGGGGGHHHHH!!!!!!!

Of course she looks well, I just spent the last week pumping her full of anything that remotely indicated it might stave off the nasty bugs so we could make our way down to see you.

I worked hard, darn it, to get her here.

That’s why I don’t look so hot!

Why do doctors do that?

Why do they make throw away statements like that?

Especially when they must know we wouldn’t be there if everything were hunky dory.

Is it supposed to lift us up?

Because it doesn’t.

Okay, ranty rant over.

We think the  Ivy - girl is going to get her IVIG!

We just have to wait for some bloods to come back and the immunologist has to go to the board and present Ivy’s case but Ivy is a good candidate and by Friday we should know for sure.

From what we understand, all that is just a formality. The doctor will be pushing for her to have the IVIG, starting as soon as possible.

So there you go.

There is more information and some negatives but I’m just going to give you the good tonight

because I’m feeling positive and it’s been almost five weeks since our last admission and..and..and

YIPPEE!!!!!!

Okay?

She wanders out to the kitchen, a look of urgency on her face.

“You take me” she directs,

“you take me to the hospital”.

“Why?” I ask.

She rushes down the hallway and I follow. She has picked up her Dorothy the Dinosaur handbag and  starts to pack it.

A plastic mobile phone, a pair of undies (important when you are still in nappies), a drink bottle and “Catty”.

It’s always serious when the Dorothy bag comes out.

So I ask her again, where we are going and she cups my face in her little hands, looks earnestly into my eyes and tells me…

“Take to hospital, Mummy”.

I am starting to worry. Perhaps she knows something that I haven’t picked up on, maybe she is sick.

“Why are we going to the hospital, bubba?” I ask.

” Because *M’s* there, I luff* him. I live with him, he make me feel so betterbetter”.

My sigh is huge.

She is not sick.

Well, she is,

just a bit.

Love sick.

*M*  - paediatrician

*luff is an Ivy - ism for love.