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Posts Tagged ‘immune deficiency’

Let next week be better please.

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.

Indefinitely.

On Friday, after a three needle night,

the girl became sick.

She writhed and shifted under the sheets in pain;

her temperature high, even with Panadol

and Neurofen

and codeine.

We phoned the hospital looking for advice

but the registrar we spoke to told us we should stay at home.

The medications kicked in eventually

and so we stayed put

but by morning the cannula in her arm had tissued

and so as it turned out we had to go in anyway.

They took some bloods and sent us home again to deal with Ivy’s pain alone.

They said she looked okay and it was probably nothing.

I think anyone would look okay on the amount of pain relief that was coursing through Ivy’s body

and I said as much

but it fell on deaf ears.

It wasn’t too bad, I guess,

so long as I kept up a constant stream of codeine

and Ivy was feeling better in herself.

At least, that’s what she told me.

It turned out that she had quite an active infection going on.

Still, nothing was changed on the Sunday when we had to return to the hospital again

because her brand new cannula tissued less than twenty four hours later

and that

was just plain awful.

The doctor attempted to place the needle in the girl’s veins three times

without success

and with so much trauma to Ivy

that I thought the room we were in may combust

with all of its negative energy.

Instead the doctor ran away

after she told us it would take a long time to find somebody willing to attempt cannulating Ivy.

We’ve been in this position before;

burning through access points

and doctors.

They wanted her to stay then,

but I argued and said that they only wanted her in for convenience.

It was not to change medications

or give her fluids

or good pain relief.

It was because staying would mean Ivy would be available early on Monday for review

and why would I stay when I could give her everything at home

when she needed it

instead of having to wait for a nurse to be available.

So they called the new doctor and she agreed -

nothing would change

and we could go home.

On Monday, after  three needle night, the girl became sick again.

or was still sick

but it kicked up to a whole new level.

The  pain was there, yes

but her temperature soared

and I honestly thought, as I held her in my arms at midnight,

while she shook and cried and writhed

that I was going to pick her up and drive to the hospital,

eating humble pie all the way

but with pain relief and antipyretics

and an extra dose of prednisone

and extra fluids

everything calmed down.

By morning the temperature was gone again and we had to go back to the hospital for review.

I felt as though I’d been left to cope on my own with everything

and I was just lucky to have the resources to be able to pull it off.

I was tired and emotional anyhow.

When we arrived in outpatients Ivy suddenly  started to shake

and shiver

and began to look really unwell.

I’d last dosed her with panadol almost six hours ago

and her temperature was escalating at an alarming rate.

Her pain suddenly out of control again.

I felt lucky that I had Maddy with me

and a good friend, who was also in the hospital with her daughter

because together we made a tight team;

givers of pain relief

and organisers of space, so the small girl could be all kinds of sick in private

but the doctors hadn’t seen Ivy’s febrile episodes before

and when suddenly the room was full of them

and they saw what I often do

they were shocked

and told me that she needed to be back in the hospital

where they could care for her ‘properly’ and give her everything she needed.

Here is where I may have lost the plot entirely,

jumping on their insinuation that I had somehow harmed my daughter by not seeking hospital care

and told them they were awful

and that I had dealt with the same thing all weekend

without their help at all -

even though I’d asked for it four days before.

It might have been where I told them they were asking the impossible -

that this week was full on

and that I was basically on my own to care for seven kids,

now spread within a 100 km radius between the hospital and home.

It might also be at that point that I looked at my unwell baby, curled up in my arms

and came to my senses

because at the end of the day

I would never forgive myself if something bad did happen to Ivy on my watch.

I can barely forgive myself now.

I may have cried alot

and felt bullied

and trapped.

I might have sobbed while they poked her and prodded her

and did more tests

and continued to leak stupid uncontrollable tears

every time a health professional came near us

but in the end,

my brain finally settled on the fact that we were being readmitted

indefinitely.

 

 

Things that should have been.

This afternoon we should have been driving to Sydney to take part in a Starlight segment on Mornings on Channel 9.

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.

 

Princess Rabbit.

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

and extended.

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.