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hospital

Hopefully healthily home.

Putting a positive spin on hospital is hard

but it needs to be done

else you may lose what’s left of your sanity.

So before I go any further -

Ivy’s team have been amazing and our nurses brilliant.

I have never been so happy to report that things have run like a well oiled machine to get us to tonight.

We were forced into a midnight dash to Accident and Emergency on Monday

by  uncontrolled, unrelenting fever and an alarming heart rate

and Ivy has been becoming reacquainted with some of  our favourite IV antibiotics and hydrocortisone ever since.

She was in such a rapid decline that she dropped her oxygen saturations too

and needed continuous O2 and several hours to stabilise.

Tomorrow she’s going to surgery

so the kind surgeon can tend to the same niggly abscess on her belly that has been a problem since November -

which is what made her sick.

It was set off again by the full dose of immunoglobulin that was infused last Thursday

and then the gamma -

and the girl has been struggling since.

Of course that makes sense  -

an influx of antibodies are going to do what they’re supposed to and fight.

The new doctor mentioned that Ivy no longer has issues with inflammatory response ;

also true

and biologically understandable with the addition of gamma interferon.

It does its job well.

In fact, I’d have to say that for the last twelve months, since we started the girl on that medication

she has largely lived in some kind of inflammatory response for much of it.

The trouble with these pockets of infection for Ivy is that it also gets into the tissue

and without cutting all of that away

the bugs just proliferate again and eventually cause more issues

and it’s really difficult to excise all of the bad tissue without going overboard and taking too much of the good.

After weighing everything up, surgery seems our best hope, once again.

It was not a decision made lightly.

Can I just take a minute here to say that abscesses bite.

They really do.

They sneakily encase themselves in a protective biofilm that make it almost impossible for antibiotics to penetrate

but continue to infect the surrounding tissue.

Smart, I’ll give the bugs that.

Smart but conniving in an evolving bacteria kind of way.

Yesterday the girl slept.

She slept all day and all night

with her vitals all over the place

but today woke much brighter -

her temperature normal and her heart rate too.

I love it when things just work properly.

She’s spent the afternoon with the Starlight Captains

and with our awesome play therapist – having her medical play session -

something we have been trying to help with her anxiety.

That’s another post altogether.

There is so much going on with Dave and the other kids

and I feel terrible that I’m not there to help

and listen

and administer hugs along with those motherly words of wisdom that teenagers roll their eyes at and pretend to hate but secretly crave.

Perhaps that’s a post for another time too.

Tonight I’m  just hoping for a good outcome

thinking good thoughts for the girl

and a plan to get us healthily home.

 

 

Turn around.

It’s funny how much things can turn around and change in a week.

Today marked the first day that Ivy has had her infusion pain and anxiety free -

and

under a general anaesthetic.

As it turned out – it was pretty amazing.

Everyone from the nurses on the ward

to the staff in theatre

to the gentle anaesthetist who looked after Ivy with such care

to the kind surgeon, who assured me that I had made the right decision and that no harm would come to my girl while she was on his watch,

were kind and supportive.

I could not have asked for better

and the infusion itself

was such a non event -

after so many months of fighting

that I was able to just sit

and breathe

and stroke her little hand.

It was the least stressful needle I have put her through.

Ever.

Last week I never thought that I would consent to such extreme measures

but after we attempted everything again,

it was clear

that nothing was ever going to be enough

unless we gave the girl a true break.

I need to be able to give Ivy the best chance of overcoming this anxiety.

After the great group doctor edict of 2013

the lovely pain doctor  verified that she thought a hastened elevation of treatment would be in Ivy’s best interests

and so we tried lignocaine (local anaesthetic)

and hyalase (a medication that disperses the infusion further under the subcutaneous tissue)

and sodium chloride (which neutralises the ph of all of the above),

along with all of the other things we’d already added in.

The infusion itself was a hundred times better,

with less pain

and less of Ivy gripping the sides of the lounge until her knuckles were white

but the anxiety was worse than ever before.

What was already an hour long panic  ’ritual’ that we have been refining over the last six months

was extended by another twenty minutes at least

and that was only  at the point of positioning the girl,

preparing the site

and placing the needle.

There was a whole lot of stuff that went on before it

and so the decision was made.

On Tuesday when everything was finalised and we had a time locked in

I suddenly faltered

because what I was about to do was extreme

and it was a complicated regime of medication to get to the point of needling

but the cracker for me was their need to run the full dose of  immunoglobulin in quickly.

I may have lost the plot a little (lot)

and told the paed and the lovely pain doctor that I had changed my mind.

With twenty four hours and a whole bunch of them sleepless,

I settled with the fact that I needed to do something

and made peace with it.

Ivy has been on the Lovan now for just over three weeks

and she has been spending time with our awesome play therapist.

Tomorrow we are meeting another new doctor from Psychiatry (another catch my breath moment, when he was suggested as an addition to our ever growing team)

the paed and the lovely pain doctor have just been amazing

and you know,

I think I can see things starting to change for the girl.

She is calmer somehow -

happier

and she is even starting to come out of her shell a little.

She loves the pain doctor.

A lot.

I’d have to say there is stiff competition for the paed

for pole position in her heart, right about now.

Tonight, even though her heart was racing and she had a bit of a fever

and despite having her infusion

Ivy seemed relaxed and happy.

What a wonderful turn around.

For the both of us.

 

 

 

For all the world this feels wrong.

She watches as I draw up the needles.

She sees me tense.

She has not followed through on our ritual of ‘giving back control’.

Despite having every opportunity.

No places have been nominated, by her,

on her little tummy

and she is already sobbing and hyperventilating

and I know

that tonight is going to be bad.

I ask our nurse if she will do the hand holding.

I’m not sure she knows what she’s getting herself into

but because she is kind and wants to help us

she agrees.

Ivy’s sobs have turned into wails

and I am sweating before we even start.

We, the nurse and I, both try to calm her

but she was beyond relaxing before we even started

and I tell our kind nurse ashamedly;

“when it gets like this you just have to hold her down and do it”.

As I unsheathe the needle the bargaining begins -

“please Mum, please I know where the needles will go now. Please!”

and

“not yet Mum, please, I just need to relax”.

Her eyes dart wildly around the room,

never settling,

never calming.

She is like a wild deer trapped in headlights.

I give her lots of options, lots of opportunities to relax and be in control

but by the time we are at this point

everything is a stalling tactic.

There are no spots chosen

and any chance of control (hers or mine) is long gone.

I apologise to the small girl

and to our nurse

and ask that hands be held because I know that flailing arms are a dangerous weapon

when you have small sharp needles to dispense.

Our nurse does admirably

but Ivy is twisting her body from side to side

and pulling her legs up

and begging for me to not hold her down.

She has begun to tell me that she can’t breathe, that she is choking (a new cry in her repertoire of anxiety)

and my heart breaks with every alarmed scream

and every time she asks for me to stop  her eyes bury deep into mine.

My fear is reflected straight back through those eyes.

“Not there” she screams, as I start to clean an area.

“Not there either!”

“It hurts!

It hurts!

It all hurts!”

and it continues like that as I pinch up  the small amount of subcutaneous tissue needed to place the first needle.

Two more nurses come -

their faces full of care and concern shadow the doorway

hoping to help in some way.

I am hunched over her, my elbow pinning one tiny hip to the bed

my chest holding her legs

and for all the world this feels wrong,

so wrong.

How can this be what she needs?

How can I say that this is all for her own good?

Finally

the needles find their place

and she rips away from the both of us -

head into pillow,

crying and shaking.

It’s getting harder for her to forgive me these days.

I apologise over and over

both to my girl

and to our nurse

who asks me how we keep going

and if we are getting help for this

and rubs my back

and that is the  absolute end of me.

Big fat tears of resignation and failure slide down my face

and rack my body

and I launch into a diatribe of words that make little sense to anyone

especially to me.

It takes a full fifteen minutes of mutual sobbing before the girl slips into my lap

and we begin the dance of forgiveness and comforting.

I rock her

and stroke her hair

and tell her it will be okay

but my thoughts are already moving towards the next night

when we have to do it all again.

 

 

The new normal.

 

If somebody had have sat me down seven years ago

and said to me that

on this day,

after very little sleep,

I would be sitting on my bed with my husband

laughing hysterically (and possibly inappropriately)

because we had both just conceded that six weeks was actually quite a long time to be out of the hospital -

I don’t know that I would believe them

but having  lived through today (and the previous night)

I can honestly tell you that I did just that

and in my world six weeks is a long stretch of  time between hospital visits.

Six weeks is our limit though;

at least,

it’s the girl’s limit

and so we find ourselves in here again.

If you’re thinking kidneys – you’d be right

and if you’re thinking that I’m tired and shouldn’t be blogging at this obscene hour,

you’d probably be right about that too.

I’m finding it hard to switch off though

and I’ve been thinking about how we constantly change our view of ‘normal’.

In previous years when Ivy’s heart rate hit 160 beats per minute, I would feel uptight and frightened

because at the age of six the average heart rate is between 80 – 100 beats per minute

and 160 seemed extreme but now -

now 160 is nothing (160 is a walk in the park)

200 beats per minute is my new point of panic.

In previous years a good ‘break’ from hospital would have been generally accepted as months

where as now if we make it to the next paediatrician’s appointment

it feels like winning…

and so it goes.

I suppose the feelings of resignation that I feel

when I know that Ivy is sick to the point that I cannot help her anymore

and our only way out of the illness quagmire

is through the hospital doors,

is my new kind of normal too.

That numb feeling -

that disconnected-ness

started about six months ago

and they were foreign then

but now

I accept them as a way to protect myself from all of the other associated feelings;

sadness,

exposure,

stress,

failure.

Don’t get me wrong  -

it’s easy to be philosophical now

when Ivy is here

and safe

and I know that she will be okay.

Not so easy at 3am when you feel pulled in every direction -

sick baby

kids who need to get ready for their first full week of school

a husband’s pressure to be at work,

weighing up how you can manage to make it through the day

after sitting up all night nursing all of those worries,

along with an ice cream container because the small girl’s nausea leaves her panicked and retching every 30 minutes or so

but I guess that’s just part of our new normal too.