David said the paed would never admit to forgetting to organise the IVIG.

He said he would play the blame game.

He said he would say he wasn’t able to contact the immunologist or the ward or the nurses or someone who needed to be contacted to get the infusion sorted.

You know, instead of being honest and saying he forgot.

David was right.

What David didn’t count on was that he would hide behind his pitbulls receptionists and have one of them call with the news that there would be no IVIG this week.

I was so cross.

Truth be told, I could still scream.

After the phone call I went outside and I pruned the potato vine.

When I say pruned, I mean that I hacked the living bejaysus out of it and imagined that  it was the doctor’s head.

Then

I got my little saw and chopped off a gazillion dead branches and pruned back the climbing rose to within an inch of it’s prickly life, imagining stuffing one of the sharper sticks up into the ENT doctor’s nose and scraping any adenoid tissue I could find and then poking at his tonsils for a while.

and I felt a little better

and I decided that I would keep very very calm.

However, tonight I am still fuming, so I thought I might try to look at the good things…

Ivy is still in pretty good spirits and aside from having goopy ears and a slight temp, is quite well and happy.

Noah sat on my lap this afternoon and said “Love me, I am your guinea pig” and then proceeded to make guinea pig noises.

“weeep weeeeeeep weeeeeeeeeeeeeeep”!

My fence can be seen again and I think the bottle brush that the potato vine has slowly been killing may live to see another Spring.

Oh and while I did all of that pruning, I plotted a double murder and now I have space in the garden to hide the evidence.

See?

Every cloud has a silver lining.

PS, sorry for the two posts in one day

PPS, I’m not really sorry just cross and a little crazy.

“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.

*********************************************************************

Yesterday David took the night shift. As I was driving from the hospital I saw a sign outside one of the churches.

It read: Get high quickly. Count your blessings.

I could think of just one and it left me high as a kite.

Home.

********************************************************************

The paediatrician came in early today, before I arrived. (I think the nurses alerted him to the fact (paranoia much? Oy)).

He checked the girl over, gave her the thumbs up and said he would see her post op.

Post op…

Tomorrow.

I still don’t know where she is on the list or what time.

I was wanting to ask him some questions about her iron deficiency, which is getting worse by the day.

Like;

Why

and

how

and

what are we going to do about it?

Also, what does it mean for her post operatively? Will she be at an increased risk of bleeding?

He came in yesterday with his army of registrars and residents to protect him from the anger of our false start and told me about her iron stores being low, lower, worsening. He asked me if I had any questions but I could not think on my feet.

Bugger.

I should have thought faster.

**edited to add; she’s first on the list for tomorrow. 9am.

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?

Without a referral from a GP, our paed will not see the cherubs.

He can’t, it’s the rules, don’t you know.

So, this week we tried to get an appointment to see the only doctor that is harder to see than the paed.

Our G.P.

When David phoned, he was told that he was booked out until the end of the week and then he was going to be on three months leave.

David told the receptionist that our only need was a referral but it was no good.

There was nothing available with our GP.

Instead, we were made to make an appointment with a doctor who we have never met before and who doesn’t know anything aboutNoah or Ivy’s history.

Just for a sodden bit of paper that gives us permission to see the one guy in the whole outfit who does!

So we booked in for the first of August but were told that if we really wanted to we could ring each morning at 8:30am to see if there had been any cancellations.

I can’t tell you how jittery and frustrated that makes me feel.

On Wednesday I asked David to ring the paed’s receptionist and explain the situation, ask if she could kindly ring the medical centre and ask them for a continuation of referral. I know it can be done because the girls’ pead accepts this.

Her response was in the negative but suggested we ring and ask to speak to the doctor directly.

So, we tried because what is the point of getting a referral from a doctor who doesn’t even know why we need a paediatrician in the first place.

It was no good, we couldn’t get past any of the pitbulls receptionists. They simply would not give a referral without seeing the doctor (centre policy, you know) and they would not allow us to speak with the GP but as ‘luck’ would have it they had a cancellation.

We just had to be there at 3:30pm

It was 2:30pm and we were an hour and a half away (at the reptile park).

We made it by the skin of our teeth and when we arrived at the medical centre the GP was waiting for us.

He asked what we wanted and I told him it was only for new referrals for Ivy and for Noah.

He wrote a two sentence document and charged us $58 each for the priviledge.

As we were walking out the door he casually mentioned…”You know, you could have just called me and I would have written them and faxed them through to the paed, you didn’t have to come in just for that”.

(Insert large eye roll here).

Just another case of Boonie Bureaucracy!

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.

You know, that frightened, sick in the guts, knot in your throat, something bad is happening worry that you get when someone special is sick?

Yeah, that’s been me for a large part of the week. (As if you guys out there didn’t know).

The thing is, I’m not good at telling the paed.

So, instead of going in like we should have on Friday, I stayed home with her.

In a last ditch effort, the paed asked me to up her Bactrim and Ivy’s stomach protested loudly to that.

In the small hours of the morning Ivy started to go down hill. Rapidly.

At lunchtime Ivy  was vomiting and weak, so I asked David to page the paed and tell him we were coming in.

Before he had a chance though, the paed called us and told us to come in.

Perhaps some wierd cosmic ‘must do now’ thing? Who knows…

So here we are, in the hospital.

After the last admission, David bought mobile broadband for me and I am trying it out for the first time tonight.

The girl is on IV antibiotics and fluids and is asleep as I type this.

I am having an MSN conversation with my husband.

It’s a pretty weird existence.

I’m so tired that I can’t think straight.

More tomorrow but I  just thought I would let you know; the girl is in the best place now, somewhere she really needs to be, to be able to get better.

Oh, and the nurses here are fantastic.

Here’s to a fantastic long weekend! (not)

Was Ivy that sick that she needed to see him today? He had a twins’ birth he needed to be at and alot was going on, did she really need his time and attention or could it wait?

I said she was sick.

If she weren’t, did she really think that I would take an hour long drive in stormy weather?

What for?

Just to rattle his cage a bit? Make him work harder?

Ivy is sick.

No, she is not at the point of needing an emergency admission but she does need someone, other than me, who has not slept well in over a week, to cast an eye on her and to treat her.

She does get up in the mornings, quite bright and able to tinker the hours away but after her nap it is a downhill slide into the nights which are full of tears and pain.

While Noah has been inflicted with croup and now asthma as well, his recovery has been short and sweet and, functions normally, despite a two day setback.

Ivy’s temperature is up and down, she has a wet cough and her ears are producing some funky smelling stuff that, no sooner do I put the ear drops in, reproduces at an alarming rate and gloops out like slow moving lava. Her antibiotics are pushed up to the absolute maximum and this is making her vomit, or maybe it is just an explosion of gooey pink fluid, when she coughs too hard.

She claims her legs ache, her throat is sore, she is eating little and drinking little and well, you get the picture.

Having said all of that, she is predominantly okay.

The thing is, she was okay just before she moved into sepsis the last two times and that is what scares me, I think.

Ok is not good. I’d settle for good.

Ok is not great, great would be the best.

Ok is not acceptable for me.

Is that bad?

I don’t want to stress anybody out. I don’t want to make the paed’s day a living nightmare.

I do want Ivy to feel well.

Last night, I was lying with her as she grizzled about her pain, looking at her, holding her little hand in mine, I wondered if this constant illness is going to change her.

When Immy was going through all of this, it was very different.

For a start, I would never have waited on a 39 something degree temp with febrile convulsions. I wouldn’t have to consider family dynamics and when Lily came along (Maddy often came to hospital as a boarder) I had the help of my mother in law. David, a junior at the time, would not have to weigh up his job security over his family and neither would I. 

 Our paed, who had a good understanding of immune deficiency, supported Imogen’s need for quick access to IV antibiotics. We were usually in and out in a few days, with barely a ruffle to have to smooth over. Yes, there were some scary times but once we got into the swing of things, the girls’ paed was very good at slowing the emergent admissions by heading them off at the pass.

Immy would be discharged and that girl was so easy going, she seemed to transition back into the outside world with no problems. There would be no lag, no five minute breather. We just kept going.

She never asked about or recounted her hospital stays, other than the reflection that she loved the deep hospital bath. Of course, in later years she has asked questions but once answered she moves forward and doesn’t look over her shoulder.

Ivy is a different story.

Since the last bout of hospital admissions she has had an increasing fear of all things medical, which is understandable but beyond that, is the constant need for reassurance; that her old canula site is  better, that her ears are okay, that she is ‘very brave’.

She is second guessing herself and her ability to heal.

After we come home or after a long bout of being sick, she takes an equally long time to be emotionally well, with the world. If I were to take her out the day after a discharge, she would not cope, hasn’t coped.

So, I sit in the dark, bowed over her like some old knotted willow tree and I worry and wonder how this is changing who she was originally supposed to be.

Will she go through life always scared and worried. whereas before she may not have?

Will she second guess her abilities?

Will she become the weaker person because of all these years of recurrent illness and what can I do to help her?

I cuddle her and tell her she is the bravest soul I know. I kiss her and tell her she is better. I encourage her to be active when she is well. I distance myself so that she can just be one of the kids.

Am I doing the right things by her though?

Nobody wants to screw up their kids.

I want her to be everything she can be. I want her wildest dreams to come true. I want her to be happy.

That’s all.

If she can be happy then I will have done my job well.

*edited to add, In the end, Ivy’s appointment was only pushed back an hour*