Posts Tagged ‘immune deficiency’
Monday – terribly sick.
Tuesday – hospital.
Positive for Vancomycin Resistant Enterococcus.
A very nasty bug.
Will need a long course of IV antibiotics to get rid of it.
Wednesday – more of the same (pain,antibiotics, fluids, sleep, sleep, sleep, hydrocortisone and lots of tears)
Thursday – a whole lot better.
Stable, so gate leave for the weekend (yay).
Friday – cannula tissues.
Back to hospital for new cannula.
New cannula inserted.
IV antibiotics recommenced at home
and lots of other stuff (both good and bad) in between.
Let next week be better, please.
Instead we are in the hospital, while Ivy fights off pyelonephritis.
We’d brought a brand new tutu, in a gorgeous pale violet
and Ivy was hoping to wear a yellow flower in her bun – the same colours that the Captains wear.
Sadly it’s not to be.
Instead she is on multiple IV antibiotics, hydrocortisone and fluids,
she’s had a new nasogastric tube inserted
and way too many tests for a Tuesday.
She did warn me last week, when she was unwell and missing school;
“I’m just hanging on,” she said
“for my ballet concert”
and hang on she did.
Her nasogastric tube was taken out on the Saturday morning and she danced on the stage
beautiful and free
and came away from it floating on cloud nine.
I wish that it were different somehow – that we had no need for blood donors or Starlight wishes,
although I am grateful for them
and that Ivy could be the model of good health instead of disease’s poster girl
and that she could live her life outside of these hospital walls for a very long time,
if not forever.
Instead we celebrate the milestones we can and cherish in the gift of each day
and find solace in the strangest things like a heart rate that sits in the 130′s instead of 200.
One of her favourite teachers calls her “Princess Rabbit”
and when she does, the small girl’s face lights up
and her eyes crease at the sides
and now Noah calls her that too.
Her mouth turns upwards and she giggles when she hears him say it
but there was not much smiling today
and there was not much laughter.
I thought she had a urinary tract infection
and she does – growing an ecoli bug
that has knocked her down again.
The really terrible part of all of this is she now has two hotspots in her belly,
away from the scarring and the excisions of last month
but when they took her to ultrasound today
they found that the original abscesses had reformed
A multiple tract with fluid pockets just like the chest wall.
How is that right, I wonder.
I asked the new doctor how that could be and she told Dave and I
in no uncertain terms
that we are breaking her skin multiple times a week with injections and infusions.
Her beautiful skin,
her best protection from all of the germs out there
that we humans live with
and barely give a thought.
We are interrupting that by the piercing of each tiny needle
and her first line of defence – her neutrophils
they just don’t put up a good fight.
She said the abscesses in a child with Ivy’s immune deficiency were age appropriate.
As if anything like that should be considered that way.
Almost like a milestone of sorts.
It made me feel ill to know that something like this is considered to be normal.
It doesn’t feel normal to me.
It feels wrong.
The thing is, I pushed and pushed for the subcutaneous immunoglobulin.
I was excited by the thought of the gamma interferon
and I was happy when Ivy was started on the growth hormone
I thought it would all be a good thing.
It’s been anything but.
I feel as though I have traded one site of infection for another
and this time it includes multiple surgeries.
I know it’s sounds wrong to say but I miss when it was just central line sepsis
and more so I miss when it was just middle ear infection, needing long term antibiotics.
Regardless of how I think or feel and what I would like to see happen
I have no ability to change what the doctors assume is the right thing for Ivy.
I can’t make them do anything
and I can only be guided by their advice.
Monday was going to be our discharge day but everything is different now
and our exit moved back.
She is getting better though, which is possibly all I can ask for
out of all of this – A period of time where she feels okay.
I hope she feels better still in the morning
and that I can see the sides of her eyes crinkle up in happiness again soon.
My little Princess Rabbit.
I wish things were so different for her.