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.

“So, I’ll see you at four”.

He seemed unimpressed when all of the lackey doctors fell about laughing and I knew I would pay for it the next day.

We didn’t get discharge until 2.

The ENT doctor came in earlier and advised that she stay away from  all social activities for five days.

When I told him she had none, that if we went to the supermarket, she came home with pneumonia, his response was;

“Well, that won’t happen anymore, I’ve cured her”.

Ahhh, yes.

He has a very healthy ego.

I’m sure he said the exact same thing the last time he operated on her.

but

in a bold move of unnerving positivity, I put both Noah and Ivy’s name down for preschool next year.

Next week Ivy goes in for her first infusion of IVIG

and so my plan for normality begins.

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.

Her poor little body has completely broken down.

The worst part of it is the blisters, actually, it’s the blisters and her ear.

She was complaining of a sore bottom and I checked, I did, before we left for the long drive into town.

She was crying and uncomfortable but there was nothing to see, other than the red colouring it had sported for the last few days.

By the time we reached the Performing Arts highschool, she was wailing, so I checked her again.

Big welty blisters the size of  20 cent coins.

Six of them.

Were they there before?

 How did I miss them?

No, they weren’t there but she was telling me and I didn’t hear her.

What kind of a crap mother am I that I can’t keep the stupid blisters away?

I had her in a disposable too and so the skin had stuck to the paper so when I pulled the nappy away…

Oh.

I could just cry because I hurt her.

Her ear has been bleeding overnight.

The ENT doctor will tell me it’s all part of the infection and that I should not be concerned but blood mixed with goop makes my stomach turn over and the smell is awful.

I know she has pain with it.

I feel like the worst mother in the world today.

My poor, poor girl.

Perhaps I am not the right person for this job.

I can’t fix this.

Ivy is sick again.

blah blah blah.

Same old same old.

We called the doctor two days ago and, what a surprise, he never called back.

Blah blah blah.

Boogety “I’m too important” doctor’s receptionists who don’t listen and who won’t do anything you ask of them just because you are low life clientelle who want too much of the doctors time in their humble opinions.

Doctors who don’t give a rats.

Blah blah blah

Immunologists who say to call them on a specific day only to be told (by pitbull receptionists) they are not available to talk to clientelle and if you were wanting a word with the doctor that holds your daughter’s future in her hands, that you will need to make another appointment.

In three months time.

Blah blah bl**dy blah!

Snot and vomit and ear goop, oh my!

Tears, fever, worry and mess.

Hospital; will I won’t I?

Should I?

Blah blah blah.

Evening phone calls from doctors who call too late to be effective and don’t apologise for not ringing a script through on time.

Immunologists who just don’t bother ringing back, at all, despite messages left and clientelle doing what was asked of them.

I need a holiday.

Sure, like that’s going to happen.

Blah blah blah!

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?

If Ivy doesn’t make it to the immunologist on Tuesday because your second rate weather has caused her to catch another hospital worthy lurgy, I will kick your frosty backside right into next year.

So there!

Yours Sincerely,

Sick of Snot.

Today we went to the paediatrician.

Ivy has lost just over a kilo.

Her cortisol levels are out of wack.

Her iron stores are low.

Her chest x - ray looks better, the pneumonia is clearing.

Her kidney functions are still okay.

Her  left ear is discharging, her other is infected.

Her white cell count still high.

She is still sick.

But

it’s time to move forward.

We are going back to the immunologist on the 22nd of July.

After that we are hopefully going to start IVIG or Intragam as it is commonly known.

Before she has her operation on the 7th of August.

What is IVIG?

It is a blood product, a plasma that is rich with antibodies. Ivy will have this infused into her body every four weeks. It will help to boost her own immune system and with any luck she will be able to have something of a normal life.

Sure, there are risks.

There are with any blood product

but

She might be able to go to pre school next year, without fear of catching every nasty bug under the sun.

She might be able to go to play group, go to a play centre, a shopping centre, a doctor’s office, visit friends and not walk out with some disease that might not have made the carrier sick but most certainly would Ivy.

It might mean less of the hospital and more of the sunshine.

I’ve never wanted anything other than to see her healthy.

I’ve never wanted anything more than this. 

This is our chance, I think.

This is her chance.

But No.

Thursday is Lily’s 10th birthday.

And I’ll be in here.

I think I have just been made to do something I don’t want to do. I think I just consented to more surgery for my daughter.

Backed into a corner by circumstance and a small single room and two heavy weight doctors.

The ENT doctor’s reasoning?

Then the paediatrician will stop ringing him…

and I will stop ringing the paediatrician.

Because Ivy is such a pest.

I feel like a trapped animal.

No one can understand why I don’t want to have Ivy operated on. Not just the doctors but family and friends too. They all think it is so cut and dried.

They all think I’m nuts.

Even though I told them about Imogen’s adenoidectomy and how a month later she was in hospital very septic with a tonsil abscess and how it took us almost a month to get her well enough to be discharged.

You know, Ivy is NOT Immy.

Except she IS.

Every problem we have had with Ivy, we have had with Imogen.

The Ectodermal Dysplasia.

The immune deficiency.

The ear infections, the upper respiratory tract infections, the pneumonias.

I told them about my experience with Imogen and they laughed at me and said that Ivy was not Immy.

So now, even though Ivy is immune deficient and she is immune suppressed she is going to have an operation to remove her adenoids and they are going to put more grommets in.

The feelings I have right now are too many to get a good handle on, so I’m venting on my blog, trying to get perspective.

I give up.

I just want to take us home.