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Ivy update.
Aug 21st, 2008 by Tiff

The immunologost called back.

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.

Normality…
Aug 21st, 2008 by Tiff

 An ache, a pull, a constant battle;

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.

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