Archive for September 2011
Up until now.
“I’m scared” she says,
“can I snuggle with you tonight”.
I climb out of bed and bring the drip stand over.
It has two imeds and a syringe driver,
bags of fluid and prison orange power cords
and three long lines which snake around and into her chest.
It’s size and weight make me feel as though I am shouldering a large
metal/plastic being
I pick her up and carry her with me and together (the three of us)
we reposition everything so snuggling is doable.
I can feel her hot, quickening breath in the nook of my neck
and I think I can feel tears too.
“I’m really really scared” she whispers
“I know, baby” I soothe (I’m scared too).
I lie awake and watch over her until her eyes finally flutter and close
and her breathing slows into sleep
but I can’t sleep or relax.
I greet the dawn with worries that I have made the wrong choice,
that I’ve signed consent for something that could be a step in the
opposite direction to the one I’m wanting.
The fold out bed is barely made for one, let alone two but we manage,
somehow.
She sleeps long into the morning.
I think maybe, it’s her way of shutting things out.
Before 9:30 the surgery escort is here
and not one of us is ready.
Not the nurse,
nor Ivy
nor I.
We were all expecting a long wait.
Things move at lightening pace though and soon we are in
the anesthetic bay.
She is crying and shaking and there is nothing I can do to take this away
from her, no matter how hard I try.
I can’t help it -
the tears fall into her hair as I kiss her little cheek.
The anesthetist is lovely and fills her line with midazolam and soon she
doesn’t care much about anything.
The white sleepy juice comes next and I kiss her goodbye.
I know the routine.
The surgeon walks me to the double doors.
We speak easily, like old friends, because we have seen each other a lot
these past few years.
I ask him to look after her and he says in his gentle voice
“I always do”.
It’s true, I think.
He always does.
I wait and wait.
The waiting always seems unforgiving
but soon enough I am called to recovery
where she looks at me and gives me a watery smile.
“I have no Hickman’s” she says
“It’s over” I tell her
and she shuts her eyes until we are back in the ward.
I can see the deep dark bruising appearing already.
It will be a reminder for a while of all that she has been through.
In the room she is distant.
It seems like forever but she is digesting the day
processing it.
“I can go swimming” she says suddenly in realisation.
“I can be a normal girl”.
For the first time I feel like I may have made the right choice -
it creeps in slowly at first,
almost uncertain as it settles into my being
but then;
“I think I would like to have a bikini. Maybe in yellow”
and as the words exit her mouth, I see her first true smile in days
and hope explodes in my chest
A feeling that has been quite foreign
up until now.
Clear cultures don’t mean much.
The cultures came back clear
and yet, tomorrow Ivy will be on the emergency list for removal of this line.
Two years ago, when we were considering Ivy’s first port a cath
the paed remarked that it would be one of the best decisions we made
for the girl’s care.
In fact it’s been one of the worst
and even though my heart is really torn right at this moment
about putting Ivy through more surgery and pain
and all of the what ifs
I think that taking the Hickmans line out and never letting anyone put
another central line into my daughter ever again
is the best choice I can make right now.
When I look at everything,
sepsis and the damage that is causes
is by far the most dangerous, scary thing that we have ever been through
and by doing this I am taking away a big risk
because we have been lucky so far.
Why dare the universe again?
There has been some kidney damage but we’ve caught a break with every
other vital organ -
the heart
the brain
and I worry that the next time we won’t be so fortunate.
Having the line in, well its just not worth it.
I may live to regret all of this and be beating myself up in three weeks time
as Ivy clings to me for peripheral cannulation for IVIG
but
Ivy may be finally able to live as an almost six year old should
and this time next year, the thought of sepsis will just be an awful,
distant memory.
Up ended
Yesterday was a beautiful spring day.
Noah was home sick, well convalescing really.
Recovering.
His ten day old lurgy suddenly freshening and becoming tonsillitis-
which he is prone to
but he was enjoying his day in my bed, eating fish and chips
and watching man shows on the tv.
Let’s say he was in his element.
The sun was out and I hung out several loads of washing.
The sky was an amazing blue
and the sun was warm on my back.
That was before the universe turned upside down.
Have you ever noticed how bad things always happen
when you are feeling really *really* good?
I am sure there is a lesson in there somewhere.
The short story is that the school called to tell us that
the small girl was unwell.
After waiting it out for a couple of hours we landed ourselves in the hospital.
In the hospital, in the resus section.
Don’t ask me why I waited.
I mean, you could ask but I would probably just cry and become irrational
and blubber something incoherent.
Pretty crazy, frightening stuff;
doctors in and out,
needles,
blood work,
lines accessed,
heart rates sitting in the 180′s
and all the while Ivy was out of it.
The doctors aren’t sure yet but the paed,
when he saw her
said she looked classically “Ivy septic”.
This is the part where you cuss and lament
‘not again’.
Why not, I did.
She’s got three antibiotics and hydrocortisone stabilizing everything
and her potassium decided it would join the total body break down
and tank.
So she’s having IV replacement of that too.
She’s been asleep for most of the time we’ve been in here.
Awake for short periods of time, to tell me she had a headache
or that her joints hurt
or so the nurses can ply her with more panadol.
She has no idea why she has cardiac monitor stickers on her
and, frankly, tonight,
she doesn’t really care.
Food has not played a part in her existence today
but she has just started drinking, as I’m writing this.
It’s progress.
Word on the street is that the line will come out,
cultures pending.
I’m hoping for an eleventh hour miracle
or maybe
I am ready for Ivy to be rid of all lines.
Maybe I’m hoping for a definite line sepsis diagnosis.
Not that I would wish that on her, obviously.
I don’t really know what I’m wanting,
or what I’m blathering on about, clearly.
Well, I do
but it seems an impossible dream to want good health for my girl
and maybe a little good luck thrown in there for all of us.
Central Venous Lines and Ivy are not a good union
no matter which way I look at it.
I think, no, I *know* the girl has had enough.
In my heart of hearts I know that line has got to go.
Whatever happens, we have to wait for the cultures to come back
before any concrete plans can be made.
A wee problem.
A couple of months ago I picked Ivy and Noah up from school.
Ivy came out with her tights removed and the unmistakable smell of urine.
When asked, she explained that she had had an accident in the class room
“because the teacher said I couldn’t go”.
She said she had held on for as long as she could but when she had put her hand up
she was already busting.
To say I was angry was an understatement.
For a start, a child’s bladder is a lot smaller than adult’s
so the length of time that they are able to go between toilet breaks is shorter
and that a five year old child is very new to the art of holding on to go as well.
Add to that the fact that Ivy had a bag of fluids and antibiotics infusing into her body constantly
and that she already has kidney damage.
I felt that she should have been released, to go to the bathroom when she first raised her hand.
Besides all of that,
I want to know how one human being can decide when another human being will need to go to the toilet
and when they should be ‘allowed’ to.
It seems wrong.
Ivy came home upset and shamed
and then proceeded to wet the bed that night.
I felt very sad for her,
I mean, I’ve been in that position before,
when I was a child
and I know you feel terrible
and that loss of control was a huge deal for the girl, who doesn’t have much of that at all in her life.
We addressed the issue in a way that we hoped would stop it ever happening again.
Today I was driving into the hospital with the girl and I heard on the radio
that a government agency is now making their employees clock out when they go to the toilet
and that,
if they spend more than five minutes in the bathroom,
they are reprimanded
and asked to explain why it took so long.
To be fair, I understand that some people might like to take their time, tweet, use facebook, read a magazine,
whilst under the guise (and behind the door) of doing their businees
but surely that is rare.
What I want to know is how is it fair to do that?
How can others decide how long is long enough?
Not one other person can know another’s circumstances.
Something that may take five minutes for you, may take me ten.
Perhaps I had a spicy curry on Sunday night and now, on Monday morning, I’m having issues with my food choices.
Maybe I’m pregnant and I have morning sickness
and I’m in a hurry but now I can’t just run to the bathroom and throw up
I have to run to the phone,
punch in several numbers
run to the toilet,
throw up,
clean up
and clock back in
all within that five minute mark.
That seems ludicrous, somehow.
Aren’t we taking away a basic human right to go to the toilet when one needs to go
and
are that government company not, in essence, doing exactly what the teacher did to my daughter ;
making the employees feel embarrassed and ashamed when nature calls.
Why do I even care so much?
It’s not as though I work for that employer and it doesn’t affect me directly in any way.
Perhaps it’s just that belief that sometimes people have no right to decide what is the best for another person,
regardless of their reasoning.
What do you think?
Do you think that other people should be allowed to dictate when and how long you should take to go to the toilet?