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Archive for December 2010

The medical ‘review’.

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A few weeks ago the nurses bundled up a whole pile of  medical stuff,

procedural paraphernalia  and handed it to me.

It was time for me to take on the accessing of Ivy’s port full time.

The choice was kind of, sort of taken out of my hands.

As it turns out it’s been okay,

if we forget about the whole emotional side to it and focus on the practical.

It’s limited the time we need to be going into the hospital anyway,

which, if your hospital is anything like my hospital,

is a good thing.

It takes an hour to get there from The Boonies

and then sometimes

another hour to find parking for the big white bus

so avoiding that

and avoiding having to drag two kids into, what is essentially an adult world

has been good.

A relief.

A break

and we’ve been motoring along quite nicely

but

there is always that fine line of control, isn’t there?

So it came to pass, this weekend just gone

that the nurses started to make murmurings of our having to come into the infusion lounge.

They didn’t want to access her

I could do that

but for policy and procedure purposes we had to come in to see a doctor.

A review, they called it.

I understand that.

I do but finding a day to squeeze in a trek to the hospital

among presentation days,

meetings

and end of school celebrations

is no mean feat

but yesterday we made the journey,

found a parking space virtually at the front door of the hospital

and made our way in.

It was really nice to see the nurses, touch base and talk with them

but as I am sitting here, typing

I am still left wondering what the point of seeing the doctor was.

He sauntered over

didn’t introduce himself (a pet hate of mine)

and asked me when the paed was going to review her.

When I shrugged and told him probably next year

he said that Ivy would need to be reviewed before that.

(I thought that was the whole point of coming into the hospital in the first place).

Ivy could not possibly stay on the hefty dose of antibiotics she was currently on

and if there was no infection in her ears then it would probably be good to consider a trial off them.

Did I think that I could relay all of that to the paed?

He then bent down and looked at the side of her face and declared her left ear clear.

Now, I’m not sure

but I thought you needed an otoscope to look at the drum of an ear.

Maybe I’m wrong.

Maybe he turned on his x – ray vision and I didn’t notice.

He then said,

“well, there is not a lot that I can do until the paed reviews her” and walked away.

This is where I let out my long frustrated sigh with the medical world that we find ourselves a part of.

Scream with me if you want.

For a start;

Ivy has trialed off her ‘hefty dose’ of antibiotics several times

with dire results.

She won’t be doing that again any time soon

and I would like to know how that doctor,

who didn’t introduce himself,

who didn’t know Ivy at all,

who didn’t examine her – didn’t even lay hands on her

can seriously write in her notes that he had reviewed the girl

and I am struggling to understand why we needed to travel all the way in there for that;

for the threat of taking the antibiotics away if we did not chase the paed into his own examination of ears

that I know are clear.

I’d like to know why being the go between for doctors of varying specialties has become my job over the course of the year.

Don’t they teach fledgling doctors how to use a phone these days

I’m sure even email would be an effective communication tool.

Perhaps they are just too busy to call each other

and like the world at large, think that I have nothing but time on my hands.

Tuesday was a very good day.

Today was a most amazing day.

We secured a new dress for the girl.

I purchased a shirt without chocolate stains

and early this morning two men from the ABC ‘s 7:30 Report

started setting up in Ivy and Noah’s bedroom.

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Noah’s eyes boggled at the size of the camera.

Ivy thought Noah’s reaction was cute.

Noah never took his eyes away from the equipment.

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Ivy was right, it was cute.

David tried to keep the small sausage dog quiet

and I skulled a bottle of Rescue Remedy.

Okay, maybe not skulled.

My nerves were so bad, I felt like drinking the full bottle.

Instead I went and found my body shaper undies,

I mean my big girl undies.

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The interview was for raising awareness on the importance of blood donation.

I talked about Ivy and IVIG and how the infusion she receives every three weeks

allows her to have a better, happier, fuller life.

I talked about going to the shopping centre before the Intragam

and how a simple trip to buy some food

resulted in pneumonia…

Several pneumonias

and sepsis

and all sorts of other infections

and what an awful time it was before the IVIG.

I talked about supply and demand

and how donating blood is a gift,

that people who donate have changed our family’s lives for the better

and that Ivy’s was so different now from what it had been just over two years ago.

At least,

I think that’s what I said,

among the nervous yammering.

I really admire people who can look at a camera and

just

speak.

The guys were really nice and kept telling me that it was going well

and I knew they were just,

you know,

plumping my pillow

but I felt good anyway.

I’m so lucky to be able to talk about Ivy’s illness and how many people have helped us.

After the interview they set about filming the girl.

She was a natural.

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In the end she was so comfortable, it was like the videographer and the sound man were a part of the furniture.

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The producer had asked for some footage of Ivy meeting Santa

and finally the time came.

We made our way into Westfield

and met with the jolly man himself.

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He was the most amazing man.

Really.

Ivy and Noah loved him.

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Ivy and Noah both wrote letters for Santa

and decided to give him a candy cane.

A present for the present giver.

It was really sweet,

their eyes were so bright

and Ivy was so, so happy.

I think Noah was a bit overwhelmed by all of the attention.

There were a lot of people

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but he did his very best to tell Santa what he wanted under the tree.

Ivy was adamant.

She wanted a princess castle.

Luckily Santa reminded me that was on the list

because I had forgotten.

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You can’t really see but this is me (being filmed) as I express my sheer happiness that the almost $200 princess castle is on the list.

Yes.

Also; my shaper undies had rolled down with all of the crouching but do you think my husband told me?

No.

He is definitely on the naughty list now.

The people at Westfield were just lovely and so very friendly

and all up we spent a wonderful half hour with Santa.

At the end of it all St Nick called me over and kissed my hand and told me,

with beautiful, caring tears in his eyes

that Ivy was a treasure and she had been through so much and still had such a long journey to go

and that he was amazed by her

and then he wished me a blessed Christmas.

I love Santa.

It was such a big, wonderful, full day

and by the time we had left to travel home

the pair were exhausted and asleep.

Dreaming of sugarplums, no doubt.

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Not the mother of the year.

Some days I suck.

Some days parenting is the hardest thing I have ever done.

This morning I royally failed as a mother.

I snapped.

I ranted and raved,

I yelled.

I pulled the old, ‘when I was a teenager’ line

and slammed the glad wrap onto the bench top.

Repeatedly.

I rolled my eyes and gnashed my teeth

and ‘roared my terrible roar’.

I stomped around the house and left the children cowering in my wake.

I was mean.

Today, I was not mother of the year material.

What set me off?

Nothing, really.

Nothing.

Okay,

there was a money issue

and an attitude problem

and I feel like I’m running on empty

almost all of the time

but that is no excuse.

I’m the adult here and I should have roped my tantrum in before it got out of control.

Before I screamed down the phone to my unsuspecting husband that I wanted to run away

before I took that first deep breath and jumped off the edge into irrationality.

I’m not proud.

I am ashamed of myself

and I know that this afternoon, when they arrive home from school

I need to apologise to those kids

because none of it was their fault at all

and hopefully I will be able to look them in the eye

and hopefully they will see in their hearts

that everyone has a bad day

once in a while.