My brother was a drug addict by the time he was thirteen.

It started with marajuana and escalated from there. His drug of choice was heroin but he was a poly drug binger and would take anything he could get his hands on.

Life was sometimes scary with a brother on drugs.

There was a time when I loved him. I was always scared of him but I loved him too and I think he loved me. If anyone teased me at school, he was my protector, even though he was two years younger than I and much smaller.

He was also the worst offender.

That’s how I know he loved me.

Sometimes, I thought I hated him. I didn’t though, I just hated what his drug use was doing to him, my mum, my family.

He was pretty violent, my brother. He hit me and threatened me with knives and threw things at me. He choked my mother until she passed out.

The police came often.

The worst time was at Christmas and my mother was at work.

They came with the dogs and searched the house. They pulled all the ornaments off the tree, pulled them apart, while my sister and I looked on, huddled together on the lounge.

They had no warrant and they had no right to be there because we were home alone until Mum finished up.

The whole neighbourhood came out to watch and nobody questioned them as they ripped our home apart looking for drugs because, by then, my brother  was a supplier.

They didn’t find anything.

He stole and manipulated  and hurt everyone who loved him, especially my mum.

Once he was ‘dumped’ on our lawn after overdosing, by some of his so called ‘mates’ in the early morning hours. My mother hauled him inside, kept him conscious, showered him, made him vomit up the crap he had taken.

She loved him but it was killing her, watching her boy self destruct.

He died when he was 17.

A doctor prescribed him a strong pain killer. He took every single one of the sixty tablets, crushed them, mixed them with water, drew it up into a syringe and injected it into his vein.

He was dead by morning.

It was declared an accident but to this day, I’m not sure.

He had been an addict for such a long time, he knew what he was doing.

My sister’s drug use was much quieter.

It effected her schooling and she didn’t finish year nine but it was in her adult life that it caused the most damage.

She brought two children into the world and chose drugs over them.

I will never understand.

My kids know all about their uncle and they have seen first hand the effects drugs have on families.

I still worry though, especially with the big boy. My sister watched as my mother tried to piece her life back together after Andrew died and yet she turned around and did the same thing. 

They say the ability to have addictive tendencies is genetic.

I only hope I’ve taught them well, on the cusp of high school and adolescence and the turbulence of self discovery.

Drugs ruin everything.

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.

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.

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*

Here is a picture of Ivy when she started the prednisone

.

This was about a month in, January, weighing just under 12 kgs

This is Ivy at the beginning of May.

Weighing it at 15kgs.

See her face, the roundness, the loss of her neck? It’s known as ‘moonface’ and is a typical sign of Cushing’s.

I know, what she really needs is to get off the Pred but that is not an option, right now.

She also has;

rapid weight gain (obviously) but only on her trunk and in her face, it’s not all fat, it’s mostly fluid,

increased hair growth on her body,

joint pain,

and fatigue

and it’s getting worse.

With each day that she stays on the high levels of prednisone, the disease progresses.

It puts her at all kinds of risk for other things too, like stroke, heart attack, diabetes and brittle bones.

She is displaying symptoms of diabetes, with increased thirst and increased urine output.

That is why we need an endocrinologist.

Now.

Not in five months.

We got our letter today, giving us a date for our first appointment for the 22nd of September.

Am I the only one who thinks this is not ok?

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?!?!?!?!

Ivy was well (touch wood touch wood touch wood).

Her chest was clear.

Her stomach not too tender.

Her ear looked much better. Still not fabulous but he said he could see a clear spot.

Her bottom was clear of any blisters, clear of any trace of the pemphigus, just a small amount of scarring.

She didn’t have to have bloods this week.

Her blood pressure was ok.

Her heart rate was ok, no sign of a murmur. Still a little high.

She actually smiled at him and gave him a hug when it was time to go.

She wasn’t scared for the first time in weeks.

So now what?

Now it’s time to start reducing the Prednisone again, now it’s time to  push the Micophenolate up.

Micophenolate is the immune suppressant that she trialled in hospital. It has lots of neat side effects too.

Now it’s time to reduce the antibiotics.

Now it’s time to upset the apple cart, take chances, take risks, find a balance, play with fire.

And we have a plan (of course we do).

For when she gets sick

and for a new doctor, an endocrinologist

and for another visit to the immunologist.

Am I nervous?

You bet I am, after the Dapsone, I am down right scared.

For now, though, I am going to bask in her wellness and try not to think about the  what if’s or the next time.

Today, I am just going to enjoy her.

Ivy finally stable and waiting admission to the ward.

It was so scary on Wednesday morning.

I couldn’t wake her up.

Two febrile convulsions and I knew she was really sick.

We had been chugging along at half health for a couple of weeks and then things went curly.

Bacteraemia. In old terms: blood sepsis.

She did not wake for 24 hours. Doctor’s came and poked her with needles and looked her over and she didn’t open her eyes. When they dripped her, she grizzled a bit but only while the canula was piercing the skin. After that, she was gone again.

She was so puffy, her skin tight with infection.

It was all so fast.

The doctors and nurses in the Emergency room were brilliant.

Efficient, kind and caring for my girl. Even the paed came to the ER, with his purple power shirt and matching power tie. Concerned, was he. Worried.

Is it wrong to love IV antibiotics?

Within 24 hours we saw a difference. Another 24 and she was sitting up.

Everyone was so lovely. The dream hospital admission. The nurses so, so wonderful.

Especially lovely was one nurse who caught me crying, questioning and double guessing my abilities. She soothed my frazzled, raw nerves with empathy and understanding.

Her name was Pippa.

Thank you Pippa, I won’t forget.

My Mum brought me food and shampoo and calmed the big kids after school. David’s Mum looked after the baby boy. He came home with five new songs.

I’ll have to ring her for the words, so I can sing them for him.

Three good friends - Mary, Tracey and Trish. Thank you. I wish I could bottle your love. I would make millions.

Thank you to everyone of you out there too, who sent their wishes. It meant the world.

She’s home and happy.

It was a plan, some pathology results and a script.

That’s right, my friends, you can doctor a patient via fax now.

Don’t get me started.

Yes, I am disgusted.

Anyhoo, the plan; was to wean Ivy off Prednisone because she is at risk of diabetes and brittle bones and a plethora of other nasties the longer she stays on the pred. Our alternative is a drug called Dapsone.

Never heard of it?

That’s because it is not widely used these days. It is mostly prescribed for Leprosy (We don’t call it that anymore, we call it Hansen’s disease because that just sounds so much better).

Dapsone can also be used for other skin diseases, one of which is pemphigus.

The paed has sent a general information sheet about Dapsone, which tells me very little about what my baby girl is about to ingest. It doesn’t matter though because I have researched it and have all that I need to know that this is one scary drug.

Lets throw around a few terms I have learnt about today, shall we?

Yes, let’s.

Agranulocytosis. This means a deacrease in granulocytes or leucocytes or in layman’s terms, it reduces the number of cells that can fight infection. Great for someone who is immune deficient, wouldn’t you say?

How about, aplastic anaemia, which is the decrease of red and white blood cells in the bone marrow or dyscrasias -  the abnormal mix of blood lymph and bile in the body?

They sound like crackin’ side effects,  don’t you think?

Then there is hemolysis which is the disruption of the red cell membrane, causing release of haemoglobin. This means that the red blood cell essentially explodes and cannot carry iron anymore and it has a great sidekick: methemoglobin, which means the haemoglobin can no longer carry oxygen.

It sounds good.

A real easy sell.

Add to that the risk of liver disorders, nausea, vomiting, abdominal pains, pancreatitis, vertigo, blurred vision, tinnitus, insomnia, fever, headache, psychosis (now that’s an extra special one)  and a whole lot of other exciting things, including carcinoma and I am really starting to see that this is a wonderful medication for Ivy.

Not.

So, what the paed is saying, is that this medication is the better choice over Prednisone and all I am wondering is how he can say that?

Just one last thing, if you are a ‘learning doctor’ out there, or even if you are an ‘already doctor’; If you say you are going to be in contact on a certain day, be in contact.

Don’t send through a fax and think that will be adequate. Because it won’t be. Especially if the patient involved is little and is about to take Dapsone and has any parent worth their salt. It will just make them angry.

Very angry.