She doesn’t feel heard
and so she is angry with her doctors, who haven’t listened to her pleas.
As a result everything has gone to hell in a hand basket
with her ability to cope with needles
and the like.
We were asked to make a new cannula plan because she was being refused a CVL
and her access is so poor, the old plan obsolete
but when I sat down with her she said that her plan was to never have another cannula again.
Which is all very nice until she has to have another cannula.
The sudden needle phobia that has resurfaced
means that the subcutaneous injections are not going well and as a result the girl has two new abscesses forming on her belly.
We went to the hospital today, knowing full well what the doctors were going to
tell us –
that those lumps would have to come out.
I hate how doctors whisper outside patient doors.
As if we don’t know.
I much prefer that they say what needs to be said to the patient’s face.
Or in this case to Ivy’s and mine.
Another thing that rubs me up the wrong way is when doctors make excuses for
I really have no issue if one doctor is unavailable.
I don’t care, so long as someone on the team looks after Ivy.
they do need to come out, those lumps.
or maybe the next day.
We have to wait to find out when our lives will be upended again.
The waiting and not knowing is hard.
Sometimes, I think it’s the hardest part of all of this -
the not knowing what is going to happen next,
the living on the edge of the cliff all of the time.
The thought of having to go back into the hospital is eating me up inside
and you can imagine how Ivy feels about it.
Planned or unplanned hospital is hospital.
Do you ever have that feeling where you cannot get on top of anything at all and
you just move from one train wreck to the next?
Today was an impossibly difficult train wreck.
I don’t blame her for being angry.
I feel angry too.
Even though I know it won’t help anything,
It’s one of those hard to control emotions, you know?
She says she’s not cross with me,
even though she takes it out on me.
It’s the doctors -
“because they don’t ever listen
and because they hurt you and make you cry.”
You can’t lash out at the doctors when you are a small girl of eight.
Doctors are unsafe
but mothers -
you can yell
and still know that they will love you no matter what.
Perhaps I shouldn’t cry in front of her any more.
I keep telling her;
“it’s your body and your choice”
because in the end she will need to be her own advocate
but is it really her body?
Is it really her choice?
The doctors encourage her to write down her wants, her needs, her questions
but in the end they make all the decisions.
All of them.
Our lives are dictated by these people.
They listen but they don’t hear.
She couldn’t go to school because they wanted to review her in the middle
of the day.
They made a choice convenient to them but not to the girl.
All control taken from her.
Oh, I could have said no but how would that have advantaged Ivy at all?
It wouldn’t have .
I would be labeled difficult or non compliant and that would get us nowhere.
They talk about keeping her for an extended amount of time in the hospital system,
taking her off medications and trialing new ones
over our heads, to each other -
seemingly never stopping to think how that might affect her,
That sounds very much like paternalism to me
and there is no choice in that.
…because there are no words right now, I’m going to rely on the strength of photos.
meet “Renly Baratheon”.
We lost our old black foxie-boy just after Christmas and
as the sausage dogs have no desire,
he is being trained as Ivy’s new protector dog
and living up to our expectations admirably.
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.
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.
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 -
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 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.
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.
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
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.