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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.

 

 

Better now, maybe.

To say that Ivy was sick would be an understatement.

What we thought was a UTI was actually a very bad kidney infection (pyleonephritis)

and so all thoughts of being home on the Monday flew out the window, once the new doctor saw the ultrasound.

The new doctor is lovely but she hasn’t figured Ivy out yet -

she doesn’t know all the quirks and tics

but she’s learning quickly

and that’s a good thing.

In a few more months I’ll have to stop referring to her as the new doctor, I suppose.

The girl is  better now

but not

if that makes any sense.

The new doctor said five days of antibiotics should resolve any infection

but we were discharged on a heart rate that makes me feel…

uncomfortable.

Nervous.

To say the least.

The registrar who discharged us early this morning, after her final dose of antibiotics, said he wasn’t concerned

because she had no fever.

Some days I want to write a big sign and plaster it somewhere so everyone knows

that if Ivy gets a fever, it means things are beyond terrible.

Her heart rate is the first give away that her body is working hard.

I tired to convey this without sounding like I was being over protective and strange but

I think I  came across as  just that.

I am (we are) very, very happy to be home though.

I just hope we get to stay here now

but my mother gut says that this is a false start.

I hate my mother gut sometimes.

I hope she’s wrong.

We need to wait for results to come back before we will know for sure.

For today though, I think I am going to have a hot shower

and a few cups of tea

and relish in the fact that Ivy will make the Book Week Parade tomorrow

and that Noah’s “Thing One”

will have his “Thing Two” linking arms and skipping the parade circle with him.

 

Home. Again.

We came home late yesterday afternoon.

On top of everything else Ivy  had another UTI or the same one as last time, maybe

and another  abscess.

This time forming in her belly where her subcutaneous needles have been going.

They did an ultrasound but said there was not much fluid there.

Of course, I’ve heard all of that before with the chest lumps.

First it’s nothing and then it’s something.

The new doctor said she thought it was nothing too

and that we could go home because Ivy’s cannula had tissued

but I said I was worried

and so she looked again and said it was something.

She spoke to the kind surgeon who said it was something too

and so it was decided that instead of going home

the girl would need to go to theatre to have a needle aspiration.

It was going to be such a small procedure that at first they thought they might do it on the ward

but the kind surgeon knew Ivy well and said it would be too hard on her.

I was glad because needle aspirations are not easy

and with needle anxiety they are not fun.

The anaesthetist was lovely and listened when I said that Ivy had surgery phobia

so she dosed the girl up with midazolam

and we more floated into theatres than anything else.

The kind surgeon said it would be quick and the anaesthetic light

and so he let me stay.

Against protocol

but I was so thankful.

It ended up that there was more than just something.

There was a lot of thick gunk

and the kind surgeon wound up having to do a small incision, rather than a needle aspiration to clear the abscess

and I was glad that the new doctor had listened to my worry.

It was disconcerting seeing all of that stuff coming from her belly

even though I’ve seen it many times when I was nursing

so I focused on Ivy’s little face

and listened to the anaesthetist tell me how watching her son have a tooth pulled made her feel faint

while she stroked the curls away from Ivy’s face with one hand

and deftly cupped the nitrous mask and maintained her airway with the other.

I guess it’s universally hard to watch your child go through trauma

no matter your profession.

In recovery the nurse told me that her son had just turned 29

and had immune deficiency too

and even though my throat closed over and I needed to go outside to regain my composure

after the surgery (does that happen to anyone else in stressful situations? Calm and then after it’s all over – not.)

I felt lucky that we had somebody who understood.

It felt like being bathed in sunshine after a storm.

The new doctor’s fellow came up to recovery

and I asked if these abscesses were going to be an issue from now on

and what that would mean for Ivy  having the subcutaneous infusions.

He said that sometimes we have to weigh up everything and decide if the risks are worth it.

Ivy’s immune system is such that these things will unfortunately happen

but the immunoglobulin and the gamma benefits are much greater

and so we accept that abscesses might (and do) happen.

I’m not sure how I feel about that just yet.

After recovery we were allowed home to wait for the results

and to snuggle with the other kids

and sit around the kitchen ;

able to debrief with hot tea and way too much chocolate.

Coming home is both hard and lovely all at once.

Things change while you are playing hospital

and there are always reintegration issues

and cleaning to be done

but that isolation is instantly gone -

the minute you’re home you are a family again

and that makes me feel happy.

Ivy is happy  too.

 

 

 

 

When one door closes another one opens.

Yesterday was not a very good day.

At least not for me.

Ivy was doing better and spent the day sitting with me 

in the large green chair

but for me yesterday was stressful.

It’s not every day that I  learn that ‘no paediatrician this side of Sydney’

would be willing to take my daughter’s care on.

I cried a lot.

When the on call paed 

(the one other doctor I had considered asking to help)

told me that 

and also his suggestion was to transition Ivy’s care over to

another doctor I could feel the last of my resolve to be strong

slipping away.

The only thing left was to cry.

Scared is a good word to describe how I felt

and cross because I felt it was inappropriate to have an unknown doctor

thrust upon us when we were in the hospital setting

with no ability to think straight 

and with a sick child between us.

People told me over and over again that this doctor was lovely

but that just upset me more.

Having an unknown doctor and peoples opinions of someone 

I had not yet met was disconcerting.

It felt as though I had to like her because everyone else did.

The afternoon move quickly and slowly at once

and the night was restless for the both of us.

Ivy tossed and turned with low heart rate at first 

and then a fever and a high heart rate

and I couldn’t sleep because my mind wouldn’t let up.

I tried to think of things I could say to this new doctor

and what she would make of Ivy’s quirky immune system

but also what she would think of me, 

this puffy-from-too-many-tears mother, with tired eyes

and an even more exhausted spirit.

When she arrived I was nervous.

She had kind eyes and a kind heart

and as I recounted Ivy’s history she was quiet and listened.

At the end of it all she said that she understood.

She understood Ivy’s disease and her pathway 

and why she didn’t mount a response 

to infection until it was very late in the illness game

and I felt myself relax.

She said she understood how difficult things were with a child 

(and for a child)

who had this kind of immune deficiency

and then she said the best thing of all.

She said I’d done the right thing.

The right thing bringing Ivy into the hospital,

the right thing following my gut

and the right thing for Ivy

and this time I cried again but not because I was frightened

or felt as though nobody knew what to do to help my girl

but because everyone had been right.

The new doctor was amazing.

She said her job was going to be 

to streamline care when Ivy had to come into the hospital,

to have some plans in place so everything went smoothly

to be there to fashion a course

and so we felt that Ivy was getting good continuity of care.

On top of all of that she said that she wanted it to be a slow introduction 

and getting to know each other,

that forcing me to take on another doctor when Ivy was unwell 

and I was not at my best was wrong

and would that be okay with me.

Would that be okay with me?

Um, yes.

So this afternoon I am hopeful again

and maybe it’s true

that when one door closes another one opens.