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All the bitter things.

 

Firstly my friends, before I start I want you to know that I love Ivy’s medical team.

That doesn’t mean that I like the decisions that they have recently made.

Nor does it mean that Ivy’s life will be any better.

Secondly, my friends,

I am about to let everything hang out here -

all my bitter, angry thoughts.

My hurt.

Click away now, if you don’t want to know or if you think there is anything to be gained from negative comments and opinions.

The thing is this;

The Friday meeting with the doctors yielded nothing.

Nothing but more plans to test the boundaries of my daughter’s strength.

No ideas to stop this endless, god-awful cycle of illness we are in.

Nothing that will give Ivy any kind of life outside of the hospital walls.

“You will just have to keep presenting to the hospital for treatment when Ivy goes downhill”, they say.

At this stage, that’s every three weeks.

I don’t find that an acceptable option at all.

Ivy has missed the first three weeks of school.

I haven’t re-enrolled her in dancing.

Her energy levels are way to low to cope with that, right now.

This morning, after her cannula was removed and she was allowed back into the education system, she dressed herself in overalls and a cute pink shirt, tucked herself away in her room, strumming on her guitar.

She was not going, she decided.

When pressed she said she felt frightened that people had forgotten her, that her friends had moved on.

She was worried that she would never be able to keep up after she had missed so much work.

I wiped her tears and cuddled her close.

I understand those back-of-your-mind whispers

but I dressed her in her uniform and sent her anyway because,

sometimes tough love is the only way.

It affects her though -

every crack in her path, every detour she has to take

and it’s not fair.

It’s not fair that the doctors expect her to accept that she will live another year in and out of the hospital while they redefine (again) things they already know.

It’s not fair to expect that our family will make it through this.

It’s not fair to the other children, three of whom are in year 12.

All of whom are struggling with their own demons.

The most upsetting thing is that, while we push the boundaries of Ivy’s health, it is ruining us

and I can’t change it.

I can’t fix this.

Do I have ideas about what I want for Ivy?

Yes, most definitely.

Will anyone listen.

No

and that is where things become very difficult.

I cannot force the doctors to do anything.

I cannot fight the people I need to keep Ivy as well as possible.

In fact, I have no fight left -

or it feels that way at the moment, anyhow.

Their long term goals include weaning from the prednisone, retesting everything circa 2007.

Forcing Ivy to blister, then re-biopsy.

Hoping that the reduction of the immune suppressants will in some way make things better.

Redefining Ivy’s immune deficiency

and then, if things don’t change, moving forward to bone marrow transplant

and that’s good.

It’s all very good long term planning.

I would love to get Ivy off the steroids and for that to be the reason for all of these infections

but I don’t believe it will change much at all

and none of it helps in the short term.

“We can’t explain why Ivy is spewing out sodium and losing water all the time.”

“We can’t explain the UTIs – we know she gets them, we grow bugs but we can’t explain why“.

They look at me, expecting, I don’t know what, to come from my mouth.

Do they think that I have any answers

because I don’t.

“We can’t blindly walk into bone marrow transplant without defining things,” they say.

I wonder if they think that is what I am doing -

walking blindly

I ask them; “don’t you think I haven’t thought about all of the risks?”

Don’t they know I think about all of the possible outcomes, including the very worst outcome of all?

I wouldn’t even entertain the idea at all, if I were not desperate for Ivy to have some kind of normality.

If I did not crave a different life for our family.

If there was any other way

bone marrow transplant would be and still is my last resort

but to date, nobody has offered me another way to keep Ivy out of the hospital and well for any extended period of time

and I feel backed into a corner.

The doctors cut her prednisone in half.

(almost) cold turkey

and then wonder why she starts to exhibit symptoms that show that her body is in adrenal crisis.

Even I know that you don’t cold turkey anyone who has been on prednisone for seven years.

Am I angry about that?

Yes.

Yes I am.

On top of everything else Ivy has to deal with at the moment – low iron, low haemoglobin, strange electrolyte imbalances, kidney issues, high blood pressure and the like

the doctors have forced Ivy to endure piercing headaches ( a side effect of withdrawing from the steroid too fast) that leave her crying in a heap.

I’m not to give her neurofen anymore  -not while her renal function is iffy

and panadol doesn’t touch the sides

so then I’m left with no choice but to  drug the small girl out with endone

where she loses hours to narcotic induced sleep

only to wake and have the same thing happen all over again

and for what, I wonder.

All these tests that come to nothing, useless expensive tests that never show us a definite path forward,

all of these trials and weanings and pushing Ivy’s body to perform when it cannot.

When, really, we are only delaying the inevitable – the doctors even  said as much.

 

 

 

 

Trusting strangers.

On Friday,  eleven days after we were discharged without any antibiotic coverage,

when we were ordered into the hospital because Ivy’s bloods were not good

and Ivy wasn’t good either,

we were (un)lucky enough to be re-introduced to the visiting nephrologist who did nothing last time

and who obviously had no intention of helping this time.

She told me that I worried too much and that I needed to stop blaming everything on Ivy’s kidneys,

that the small girl was complaining of pain in all the wrong places and there was no way that this was an issue with Ivy’s urinary or renal system.

It was probably muscular pain from inflammatory responses.

In fact, in her opinion, Ivy had probably never really had a UTI.

I mentioned the several documented bugs grown and pyelonephritis seen on the ultrasounds.

She waved her hand as if she were shoo-ing away a fly;

“those tests don’t count for much”, she said.

I told her that when Ivy started to get white cells in her urine, I started to worry.

She asked me why in heck* I would test Ivy’s urine

and I told her -

so I had some knowledge of what illness Ivy was dealing with each time.

She told me white cells in the urine were a useless test -

that it could indicate inflammation (true)

systemic infection (also true)

or could just be a blot when a kid has a fever (true again).

I told her  that until Ivy started presenting with UTI symptoms that she never had leucocytes in her urine samples

and that the last time she had  a positive white cell count and I ignored them

I brought Ivy into the hospital in renal failure three days later.

She told me to let her worry about being the doctor and that I should just stay the mum.

She was basically very rude.

Her last mistake was asking me what I thought about this admission.

I told her I thought Ivy had another urinary tract infection

to which she  scoffed that she  highly doubted  it

and I thought;

why ask me what I think about my own child if you are going to treat me as though I am some inferior species that couldn’t possibly know a thing.

Why even pretend that you would consider my thoughts.

I wish I’d have said it.

We stared at each other incongruously for a while before she backed out of the room, not making eye contact

because I was quite obviously cross with her

and no longer had any intention of talking to her about anything to do with Ivy’s health, renal or otherwise.

Our lovely not-new-anymore doctor tried to smooth the waters but the damage had been done.

I no longer wanted to have anything to do with the nephrologist’s opinion

but I no longer trusted my own either.

An hour after the altercation, one of the new registrars came into the room to tell me that Ivy’s urine sample had grown Klebsiella.

Again.

My mother-gut was right.

 

 

Some doctors are just plain rude.

They have this God complex going on that makes them believe that they know everything and the rest of us should just sit down and shut up.

It’s one of their least likeable traits and for me, it makes me not want them to lay their hands on Ivy.

It makes me distrust them.

It makes me not want to disclose any further information about my daughter’s health.

When doctors openly think they are better than the rest of the population it rubs me up the wrong way.

There, I said it.

 

Mothers take their children to these professionals and they do something that is not expected anywhere else -

they trust a stranger with the most important thing in the world to them.

They trust them with the future and well being of their family.

It’s expected that they will.

That expectation of instant trust is there from the very minute you walk into the doctor’s rooms.

On our first meeting with Ivy and Noah’s paed we spent two hours disclosing our family’s history to a man we had never met before.

We allowed him to place his hands on our babies.

We did not know much about him -

only that he was supposedly nice and that he had three young children of his own at the time

but we put our faith in him anyhow

and with all of the other doctors we have come to meet along the way to finding health for Ivy.

A surgeon asks you to trust him to cut open your little girl.

You cannot be there to watch that no harm comes to her.

She will be anaesthetised, so cannot fend for herself.

You just have to believe that this man will do no harm.

When we were asked to transfer Ivy’s care over to another stranger because it was all too hard for the doctor we had grown to like and respect

we had to do it all over again.

Time and time again we have been asked to trust because these people spend a large portion of their time at university and are supposedly skilled in their profession

but

how can you have faith in someone who treats this gift of trust with so little respect

and should you?

 

There is a big joint doctor meeting on Friday, to which we are not invited.

It’s okay – although we are uncomfortable about it, both Dave and I understand

but again, we have been asked to trust our lovely no-longer-new doctor and the paed to try to work out a plan with the other doctors in the room

and the truth is, that’s hard.

There are many reasons for this -

some are concrete

and others are strange emotional beliefs that get in the way of our (my) being able to be rational about things

but what it  really all comes down to is having to have faith in people who know a lot about us

but who we hardly know anything about at all.

 

*She actually used an entirely different word.

First and last.

First day of school.

Last time all seven of them will have a first day of school together again.

Last year of  high school for three.

Last year of junior high school for two.

First year of primary school for the other two.

Last time I will get a photo like this again.

Last sleep in for a while.

First time I’ve missed a substantial amount of the Summer break.

Last time I don’t listen to my gut when Ivy tells me she feels unwell.

Last time I listen to a doctor tell me there is nothing to worry about in regards to Ivy’s renal system.

Last day in the hospital: Tuesday.

First chance I’ve had to write and thank you all for your love and kind words.

First six loads of washing done and dried!

First day of the house feeling empty again.

Last time the sausage dogs barked at the new kittens: 11:35am.

Last time I warned them that kittens have claws: 11:36.

Last time kittens used claws 11:37.

First time I’ve looked at myself in the mirror since the last admission.

Last time I look in the mirror.

First time I’ve had to plan dinner in weeks.

First time I’ve wished for cooler weather this season.

First day I’ve taken a good look at the house and garden since we’ve arrived home and thought

there is so much that needs to be done that  I don’t know where to start.

First day I’ve felt like I could breathe out.

 

Have you had some firsts and lasts lately?

 

 

Moments (day 19)

Life consists of moments:

the long ‘when are you coming home’ hug from your husband in the middle of the ward’s hallway.

The words unspoken yet known.

The short hours of escape from the hospital so you can spend some time with your son.

The way he looks at you with a mixture of love and sadness.

The way the world looks different, more colourful, somehow with his easy words

and outlook on the universe.

The conversations with your four eldest children late at night, while their smallest sister sleeps in the huge hospital bed.

Wishing for a different life.

Wanting to make it better.

That first morning smile from the girl

and you just know that everything will be okay -

that she’s (we’ve) dodged another bullet.

Missing home and everything about it but mostly the people who reside within it.

The way your heart aches when you catch yourself wanting something other than this life for the smallest girl.

Something more.

Something better.

Another day in the hospital, nerves wearing thin  -

both yours and the doctor’s

but the girl just smiles a wistful smile and says;

“it’s okay. We can go home another time” and settles down against the white hospital sheets, as if she has known all her life that she has belonged there in some way.

Life is made up of moments

and some take your breath away.