(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.

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!

Usually, I say ‘no’.

I can’t see the park from the field and besides that, I like everyone to stay together, to cheer the boy on, you know.

Today, I said ‘yes’.

Big mistake.

Enormous.

The game started and David asked if I wanted him to go and get the kids.

‘No’, I said, ‘I trust the girls’.

So, the game came and went and still no sign of any of the kids. We sent AJ up to the park to tell the girls to stay put and that we would drive around to meet them.

When we got there Ivy and Noah were on the play equipment, Lily was there but Imogen and Madeline were off sitting on a park bench, chatting with their ‘boyfriends’.

I know I did not handle things well.

I know I saw red;

because I trusted them and they broke that trust, I trusted them with my babies, for goodness sake,

because, they used the babies as a guise to meet up with the boys,

because they were sneaky and texted those males to come meet them without my knowledge,

because  I trusted them, ok?

I felt stupid and niave. I felt used up and so I got angry and I ranted and raved like a screaming lunatic and David didn’t back me up, instead he reprimanded me in front of the children for being childish.

Now they are grounded  for, like, forever and there will be no birthday sleepover and they have lost their phone priviledges too until they are twenty eight.

I’ve asked them for an apology and here I sit typing, six hours later, and I am still waiting.

There must have been a time when my parents thanked their lucky stars for having a fat and ugly child because they would have felt safe in the knowledge that there would be none of this boyfriend bulltwang.

I knew I would not cope well with this stage.

I just did.

It’s like a sixth sense.

I’m not joking.

Okay, maybe just a little…

Adolescents scare the living bejaysus out of me.

What is your best bet, for a waiting time, my friends?

Six weeks?

No.

Try six months!

That’s right, six months, that will see us just about up to Ivy and Noah’s 3rd birthday

in November.

The paed’s idea that we see this new doctor before we see him next, at the end of May, is one of pure fantasy. In fact, I think I heard the endo’s receptionist fall to the floor in a fit of hysterical giggles, when it was mentioned.

David was told, in no uncertain terms, that we could not actually make an appointment, that Ivy’s referral would be sent to a booking commitee (yes, you read it right) and we would then be allocated a time and date to which we would attend.

Bwa hahahahahahahahahahahahahaha!!!!!!!!!!!!!!

OMG, where are we living, people?

This insane life that we lead just got a little bit crazier.

Of course, Ivy is not a high priority.

I mean, what could possibly go wrong, with a two year old, on large doses of prednisone, in the next six months?!?!?!?!

She said it because so much has gone wrong in the last few days with Ivy’s health and the medical profession sucks bananas out here in the boonies.

I could write a book about all the frustrations and ugh - type moments. I could just go mad and blurt out all kinds of obscenities on this, my family oriented blog…

Instead I am going to think about calm blue oceans and share with you a photo I took yesterday, that I was going to hold onto for the next Weekly Winners but can’t because I love it too much and I have to share.

After that, I am packing up my machete and I am going on a killing spree. **

Australia’s first case of Doctorcide - mother gone mad.

So, for your viewing pleasure and to give the paed a few more minutes head start (I hope he can run) I give you this:

** I am not really going on a spree, my friends. I am just blowing off steam…or am I??? (Insert crazy laughter of choice here)

Truly.

I have them half written and ready to go but today, I’m sorry, it’s just going to be about the Ivy girl again.

*Waves to person who says I need to vary what I write about.*

If you don’t want to listen to my worry and ranting then go here or here and you shall be entertained.

Just thought I’d give you the heads up.

Ivy is yellow. Her skin and the whites of her eyes. She is jaundiced. I am assuming from the Dapsone.

It’s pretty eerie looking at your yellow child and wondering what the heck is going on with her liver.

She has had a small outbreak of blisters.

The antibiotic that we left the hospital with is useless and well, just useless, ok?

Her ear is discharging worse than ever and I am back to feeling that tightness in my throat and the knot in my belly when Ivy is sinking into the mire that is her health.

Our paediatrician is away. He has been all week. He is at a paediatric conference, along with every other paed in town.

Our GP has taken a tour of duty with the army. (Read not available. Ever).

We phoned the hospital and spoke to one of the paediatric registrars who had seen Ivy whilst she was in.

She told us she was jaundiced, that’s what the yellow was.

I already knew that.

She told us that it was increased levels of bilirubin being produced by her liver that was causing the jaundice.

 I kind of knew that too, that was why we were phoning; because we were concerned that a two year old had jaundice, secondary to the dapsone.

She said it was nothing but we should get it checked out by our paediatrician the next day… or our GP.

Here in lies the problem, my friends.

Oh, and the antibiotics?

Persevere, even though she is vomiting it up and it does nothing. Nothing I tell you.

I think I’m going mad.

At least, I know I have a headache because of all the banging of said head on the proverbial brick wall.

…you can’t find your car keys but your toddler son knows exactly where they are.

…you get to the car and realise that your husband has taken out one of the car seats.

…you get to the pathology unit and the phlebotomist knows you by your first name.

… as you leave some old guy looks at you with daggers and comments “Awww, the poor little girl, why’d ya have to do that to her?”

But then you know everything is going to be okay when you walk from the hospital with  little hands clasping yours and an elderly lady comments…

“You’ve got the whole world in those hands of yours”.

Very rare they say, very complex.

Can anyone say understatement of the year?

They talk of DNA testing and OPG to confirm and publication and recognition of their ‘discovery’.

But what of the little girl in all of this?

Now she is sick, does her diagnosis change anything?

 No.

More antibiotics. More pain relief and *sigh* more blisters. Plus an over the top, over active prednisone induced zombie of a child.  I know that doesn’t make alot of sense, stay with me, visual coming up.

Cranky, confused, sleep deprived baby.

Not fair.

One minute she crawls up onto my lap in misery, searching for sympathy in cuddles and kisses and the next she is scampering away to spin and dance to the beat of the prednisone god’s ever compelling drum.

I am tired just watching her.

I guess it’s good she is upright but is it because of the pred that she cannot let her body rest?

She did not sleep last night and made very sure that her parents didn’t either. 

Moaning and groaning and rolling about our, now seemingly too small, queen size bed. (Too small because the Queen likes to sleep in a starfish shape).

*Bless her cotton socks*.

Her breakfast consisted of (over the course of two hours - I didn’t hit her with it all at once); liquid iron (ironically based in  sorbitol - a laxative), liquid zinc, vitamin C, Bactrim, EES, Prednisone, Singulair and two bites of a piece of pineapple.

A cocktail.

Pina wedon’tknowwhatelsetotrysowewilljusthityouwitheverythingandthensome.

The paed offered me up a hospital bed with all the dressings, on a silver platter but I turned him down. Now I am thinking maybe we should have gone.

Maybe .

I also know that when you take Pred induced children into a hospital setting you get mean, sideways glances from parents of limp, sickly, bed ridden children and throw away comments of your child not looking sick. Oh, if only they knew!

 And, providing she can hold her own, I have been given release from the crazyhouse home tonight to take Mum to see Billy Elliot.

Is that wrong to want her to hang in there just one more day, so I can paint the town red?

I will never ever wipe an old man’s bottom, clean up his mess and tuck him back into bed if he has the cheeky look of a dog with yellow eyes. (Have you heard the old country saying - never trust a dog with yellow eyes? You have now).

I will never fall for it a second time

Okay, okay. I will never fall for it a third time.

I will never ever let anyone call me ‘nursey’ again, well, perhaps, I might let David call me nursey, if we were into that kinky kind of dress up for the night thing.

Maybe.

But no old man is going to call me nursey again and get a response.

Probably a good thing that we don’t see many of those in maternity.

I will never take an overflowing cup of warm sputum sample from an old man or woman again, (especially if he has just called me nursey) nor will I discuss, in any detail, the stringy bits of blood within that sample and then go on my lunch break, ever again.

Can anyone say hello to Huey?

I will never tell weird nursing ghost stories, on night duty, just after dressing a deceased patient again.

Trust me, it is insomnia inducing.

Also, when some smarty smarmy male nurse thinks it’s funny to make creaking noises when you are already freaked out, you WILL run, very fast and very far.

I will never ever work a paediatric shift again, have a small person throw up on me and go home before showering first. I have learnt that, even though you change from uniform to scrubs and clean any vomit off skin with disinfectant hibicleanse, gastro will still follow you home and infect your three girls and husband 24 hours later.

Also, when you have an immune compromised child, it’s okay to refuse to ’special’ a baby with RSV. Death stares can only last as long as the shift. In my case, 10 hours.

I will never ever do a rotation in Birthing Suite again and agree to do all the caesareans. It messes with your beliefs in childbirth.

I will never say yes to the kids having pizza again, when I know that gastro is going around the school.

I will never ever eat something my toddler presents to me without looking at and feeling the offerings first. Okay. You can just use you imagination on that one.

Not. Going. There. Again.

I will never tell anybody who will listen that I could ‘do’ twins again with my eyes closed.

That was like daring the universe.

These are strong words, my friends and if they are too painful or heavy then, please don’t read. I need to write my thoughts down and push them out into the night.

I am not writing for sympathy. I don’t need help. I need to work through all of this.

I am writing so that I can process my feelings…

When William died, I wanted to die.

I wanted it to be me.

I literally could not see past myself.

I didn’t want to see the other beautiful children who were waiting for me to pull myself together. Of course, kids have a way of pulling you back to the present. Their life force buoying me up when I felt like sinking.

For almost four years I have been trying to get a grasp on the grief I feel for a baby who is not here, who I never really had the time to get to know. I failed dismally, of course and so I went to the medical profession for help. My GP put me on antidepressants after I lost the plot last October and I started to see a psychiatrist.

The GP moved and the psychiatrist sucked.

She wasn’t interested in teasing out the knots of grief, that had gone unattented for so long. Her answer to my weeping was to push the medication up further. All my own attempts at dealing with having William’s blood on my hands had not worked as they relied on my obstetrician to help me.

So.

Now I am off the medication. For whatever reason, it doesn’t really matter.

Have been for over a week and I am not feeling very good. Somedays, yes, I will admit it, I have been feeling… ’suicidal ideation’ creeping back into my being. I don’t like that feeling either.

I have cried buckets. I’m not ashamed to say that.

I’ve cried because;

I cannot trust any of the doctors and

I do not trust my own self.

This is so complex for me. It has everything to do with William and the choices I made for him. In his birth and in his death.

When you have to turn off the ventilator that is sustaining your son’s life, it stuffs up your own for what seems like forever and it becomes part of who you are. Seeps into your everyday.

 Now I am second guessing myself with Ivy.

I hate it.

I want to be confident in her care. I want that confidence who whispers in my ear that my gut feelings are right, that I am doing everything I can for my girl and what I am doing, is great.

I want to jump up and down and tell these doctors to do a better job.

I am her mother, for goodness sake.

But I can’t.

The doctor’s don’t help, with their mistrust but when it comes down to it, it’s me who doesn’t believe me.

That little voice, ever steadying, says, wait, maybe you are wrong. Maybe what you want for her is the wrong thing. Maybe your gut feelings are wrong.

Yesterday was a low point.

Lower than last week. Whether it was because the last of the crazy pills had left my system or because I felt as though we were not getting anywhere fast and I finally lost the plot or both. I was a howling mess of self pity.

Today is a new day though and the sun is out.

So what happened yesterday?

I got in the bus with the toddlers.

On the way to the appointment, Noah puked up his breakfast in a fetta - type pile of cark sicky goodness. Word of warning, my dear friends, do not feed your child seed bread toast after a nilla shakey and then pile him in the car for an hour long drive. This is the third time in as many months of early morning appointments that Noah has protested. No more sitting up the back of the bus for that little guy.

I kept on driving though until we found a parking spot.

I changed the boy and stripped the carseat… or was that stripped the boy and changed the carseat???

We got there and waited.

About an hour later the paed turned up and we were invited into the hornets nest of dermatologists.

Ivy had a small erruption of blisters on her bottom, which I exposed to… ooh, lets say, half a dozen derm residents and registrars, two medical students, the paed and the head honcho, King DermGuy.

They bantered around what is was, what it could be, what they would do.

Hello?!?!?!?!

Parent here.

Talk here!

But No.

After a lengthy discussion, that didn’t involve me at all and only briefly involved Ivy’s bum, it was decided that they would do nothing.

Yep, you heard right.

Nu - uh - uthin’.

Let’s pause here briefly to go over the short history leading up to this appointment…

1. The paed would not alter Ivy’s meds without us seeing this guy.

2. We were told that once we had seen this doctor, a decision would be made and Ivy would be treated accordingly.

3. Seeing this guy is easier said than done.

It was decided that we would keep reducing the prednisone and induce a blister attack! (Because the blisters that were already there were not acute enough). When she was all blistered up and in pain they would do another biopsy.

Huh?

I guess it’s a decision.

David and I have been scratching our heads and wondering why.

The last biopsy she had on her bottom was on Christmas Eve. They said it was perfect and that we could not ask for better.

The last biopsy she had has left a giant keloid scar.

The last biopsy gave us a diagnosis of pemphigus.

Why is all of that not good enough now?????

So here we are, waiting for our baby to blister and it feels wrong, so very wrong.

So there it is. The ugly just got uglier.