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Ivy – girl

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.

Stroking the dog.

 

 

This morning she is nervous

and her behaviour reflects this.

I am too.

She knows tomorrow is infusion day -

our first without a general anaesthetic.

Our progress has been slow and so we have ended by doing an additional four to our original plan

and it has been good.

The girl has been the happiest I have ever seen her,

without the stress of infusion days

but now we are moving towards our goal of  being able to do them at home again

and I am looking forward to that.

What I hope will happen, what I’m wishing for with all of my heart

is that over the last eight weeks, with all of the therapy

and the medical play

and the rest from the anxiety and worry

that we have been able to break that all consuming fight or flight response

and that Ivy will be able to once more use her amazing coping skills (and I mine)

to make that leap into firstly the needles with sedation

and finally without.

We have spent time just holding the butterfly needle and “seeing it for what it is” -

a thin sliver of metal straw and some plastic that will sting for a minute but helps her body to fight

and we have been talking about adrenaline and endorphins;

Her: ” Why, when I breathe, do I feel more relaxed?”

Me: “Because you have endorphins that are released to help you and that stops the adrenaline from making you feel scared”.

Her: “Oh, so the adrenaline is like a mean dog and the endorphins are like a kind person, who pats and strokes him until he feels happy and doesn’t want to bite anymore?”

Me: “Exactly”.

She is insanely in touch with her own body.

She is also very hard on herself;

“I want it to work. I want to do the needles at home but if in three weeks (four weeks, nine weeks, seven weeks - the numbers change with each conversation)

I can’t relax I want to talk to [the paed] about going back to IVIG”.

As her mother I can’t think of anything worse than having to find IV access every three weeks

or all of the side effects and complications that go along with it

but all I can do is listen and try to advise.

It’s her body, after all and ultimately she will need to learn advocacy for herself

but at 7 1/2, I think I should still be able to guide her.

I tell her everyone understands how this might be scary

and that our awesome play therapist and lovely pain doctor will go as slow as she needs.

Ivy can be determined though and her eyes glaze over whenever I mention it -

I feel like I’m being placated by a tiny pacifist.

Time will tell, I suppose.

For now, we are just going to concentrate on ‘stroking the dog’

and getting through tomorrow.

De- sensitising.

 

If I were to pin point the exact moment in time that Ivy’s anxiety levels spilled over and out of her cup of reserve

it would be when the PICC line got stuck in her infected and inflamed vein

and they tried to pull it out.

Everything was hard after that

and in fact,

with all of the illness surrounding those procedures last year,

followed quickly by the addition of three subcutaneous needles almost daily

it makes sense that that period in Ivy’s life would set off extreme fear issues for every future medical event.

When questioned lately about that time of her life she said,

in a totally non dramatic, practical Ivy kind of way;

“I thought I was going to die.”

It’s hard to hear her say it

because it seems unnatural for a seven year old to feel her mortality

and because I thought it too at some point during that time -

although I never spoke it to her.

Thursday will be the last of her infusions under a general anaesthetic.

Four pain free, stress free weeks

where the doctors have seemingly and seamlessly worked as one amazing team -

and okay,

they may do that at other times but never so obviously as they have these last few months.

The lovely pain doctor at the helm of this new communicating giant

has made sure I know most of everything discussed

and I couldn’t be more appreciative.

There have been so many good and positive things that have happened since she became a part of Ivy’s support network.

The other doctors seem to care more,

know more,

do more.

Last week, the new doctor (who really isn’t new anymore)

and the kind surgeon

came to review Ivy while she was having her stitches removed.

Expecting the worst, I imagine,

as the last time she had to have that procedure done

she became so distressed that she almost took the eye of the Fellow trying to take them out.

She needed sedation then

and for every procedure following it too

but

Ivy had made the decision herself  to try without Midazolam this time (a very big step for her)

and was in the midst of having the first stitch removed when they arrived.

We were both a little distressed by then.

Instead of waiting outside (which is what commonly happens)

the new doctor held the small girl’s hand

and stroked her hair

and breathed with her (and I)

while the kind surgeon was Ivy’s cheer team -

“good girl, Ivy. You can do it.

Good girl. You are amazing”.

I could have cried.

This is the way I imagined all good doctors to be.

This basic human instinct of caring for another person

and because of that,

and possibly six weeks of anti anxiety medication and therapy,

the girl was able to conquer her fear -

all stitches removed without sedation.

The doctors,

well -

they celebrated openly and as happily as I did.

They made a big deal of it

and Ivy felt that

and in turn felt proud of herself.

It was a break through.

We have been talking a lot, this week -

the girl and I,

holding the small butterfly needle (which she has named ‘noodle’)

and ‘seeing it for what it is’,

which is our new way of breaking down scary things.

If you hold it just right,

Ivy tells me,

it looks like an abstract sausage dog of sorts

and the nose

is just a metal thing that stings only for a minute.

She knows that the ‘numbing medicine’ (lignocaine)

and ‘the spreader’ (hyalase)

stops the infusion from hurting her as it pushes its way under the subcutaneous layer

and we have been practicing her (our) breathing skills again -

something that she has not been open to since early last year.

I can only hope that all of this is enough

and that the next phase of this desensitising program goes as smoothly as it can.

My expectations are mixed in all honesty and I’m pretty sure hers are too

but it’s time to try.

It’s time to step into the great unknown

and give Ivy the chance to be in control, once more.

 

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.