Ivy and Noah


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The night nurses.


The  night nurses got in trouble today.

Complaints were made.

Too noisy, too much laughter, too much frivolity -

in a place that has way too many sad noises and way too little happiness.

I didn’t hear the noise though and all I saw were four wonderful nurses doing their absolute best to keep Ivy awake over night,

so that she could go the next morning for a sleep deprived EEG.

The doctors had ordered it and then left.

I wouldn’t have been able to do it on my own.

I was dreading having to find ways to keep the small girl’s eyes open all night

but you know what -

it was wonderful.

Ivy laughed so hard (I laughed so hard) and talked to everyone – much more than she ever had before.

They made Noah feel special and  cared about.

They made hospital fun

and on a side note; when your baby tells you she doesn’t want to live any more and she wishes she could just die,

a little bit of fun in a clinical setting goes a very, very long way.

She and Noah (who had promised to help me stay awake if I let him have a stay-over with his sister) sat at the desk,

where they were made honorary nurses for the night.

They helped with spreadsheets and other colouring tasks

and then they drew patients on paper so the nurses could triage them and told the pair how each would be treated.

Even the dog with the “extraordinarily long tongue”.

The night nurses offered to let me sleep if I needed to.

The pair watched movies that one of our nurses had copied onto a memory stick because our afternoon nurse had messaged (woken) him to let him know

that Ivy had to pull an all-nighter

and when they started getting tired and retired to the room, those nurses followed her in and played the fishing game with her, using their teeth to hold the rods

instead of their hands, just to keep things lively

and helped us make up a board game

and do craft

and tried, along with us, to make balloon animals

and I was thankful.

I just don’t know that many medical professionals who would go above and beyond like the night nurses did.

Like any of the nurses in this ward would do for the children who are in their care.

Complain if you must but maybe stop and wonder for a moment what the reasons might be for the noise.

There have been so many nights when our sleep has been abandoned because of the sadness that echoes through the night in this little ward.

Unable to rest because a mum is walking her screaming, sick baby up and down the length of the ward to calm him

or because parents are  yelling loudly because they are not happy and wanting more for their own ill children.

Nurses bustling and busy as they try to do the best for everyone, when they are often understaffed and over tired themselves.

The hammering and drilling that begins at 6am as workmen try to build a better hospital for our community

and yes, some days when I am feeling grumpy and fed up, I wish that the noise would all just stop

but I would never complain about the nurses, who are just trying to do their best -

in this instance for a little girl (and her brother and her mum too) who spends way too much time in their world

and I would not begrudge her or any of the other kids the kindness and caring that radiates from these wonderful people.

Even if it is in the middle of the night.


The best room in the hospital.


We are told almost daily that we have the best room in the hospital

and we do.

It’s a room that is used for palliative care patients and also for kids who are going to be in hospital for a while.

There is a double bed at one end and a big television.

On the other side is a single hospital bed with everything you could need for a sick child

and the sun tumbles through the windows each morning, reflecting on the teal green and cream paint work.

The shower has a good flow of hot water

but best of all, there is space.

We can all fit into the best room  for a long period of time without wanting to flail wildly and request personal space.

You can make it as dark as night if you need to or you can avoid the fluorescent lights just by opening the blinds -

the windows are big enough that you can see the sunrise and if you look carefully, you can see a beach and some ocean way off in the distance.

I agree, it is the best room in the hospital

but it’s just a room

in a hospital.

It’s not home.

It’s all about perspective I suppose.

If you have to be here in the hospital then it’s good when you have a nice room.

This time, when we bounced back just four days after the last infection hadn’t cleared, we brought in our own sheets and our own pillows.

It kind of feels odd but then again it doesn’t because we’ve spent most of this year in here, so we may as well make it a more personal space.

Make it more like a home.

Some days hearing that we are lucky to be given this room makes me feel cranky because hospital is hospital, no matter how you pretty it up

but mostly I’m just thankful.

We’ll be here for another two weeks.

Ivy, who came in incredibly septic, had another subclavian line placed yesterday because cannulas and Ivy’s veins are not friends anymore.

Candida sepsis is an immunodeficient person’s worst nightmare (or if that person happens to be a small girl, it’s her mum’s worst nightmare and perhaps her immunologist’s too).

That and an unresolved kidney infection makes for a long stay, hence the best room in the hospital.

At the moment we both feel resigned, the other kids seem that way too.

Noah phoned in tonight to read me a speech that he had to do for class and proudly told me that he made it through to the next round,

where he will be reading it in front of the whole school.

I’m so proud of him

but I’m sad I can’t be there to hug him tight and tell him he is truly amazing.

My big girls are studying for their lives (actually the HSC)

and I want to be at home with them, so that when they are stressed or feeling as though they cannot possibly do another assessment

I can call a time out with chocolate and ice cream and a really bad movie.

Lily is in the midst of trying to  choose her subjects for senior years – again something I will miss

and I haven’t yet sorted through all of the things I need to do for Mal, now that he is 16.

Living in a room is like living in a vacuum, where outside life just doesn’t exist.

People occasionally come in  -

nurses to keep us sane, doctors to make us insane

but  it feels a bit like Hotel California – where you can check in any time you like but you can never leave (let’s face it we all just sang that line).

Our one attempt to leave the room today (to go and see the eye specialist) was thwarted by an acute reaction to the interferon gamma we have started to trial again.

It is what it is, I guess -

a long unending road to goodness knows what, right now

and we are lucky to have the bigger than normal space to get through this time

and it might be the best room in the hospital but I think I would prefer my lounge room

with its couch over-filled with too many cushions, too many dogs, cats and too many people snuggling with legs and arms entangled,

watching our old boxy not digital television and our slow combustion fire burning its warmth and glow into the night .

That sounds like the best room to me.


Why is it?

Why is it that you can send two socks to the laundry but only one ever comes back

or that all the bobby pins mysteriously disappear a week after you buy them

and the hair elastics too.

Where do they all go during that seven day period?

I honestly haven’t a clue.

I should just stop buying them,


Why do doctors think it’s okay to do the same thing over and over again,

all the while expecting a different outcome.

Unsurprisingly, the small girl’s neutrophils have not gotten any better, in fact they are worse,

giving us now a three pronged immune deficiency and a (hopefully – although you never know they may want to retest again just to make sure-sure-sure)

final diagnosis of  specific antibody deficiency, with a dysfunction of the innate system and dysfunction of the NEMO gene.

Our trip to the children’s hospital was as unhelpful as you can imagine.

The urologist was an arrogant, self involved so and so.

Don’t get me started (okay get me started) -

A man, who tried to cancel our appointment the day before because he ‘didn’t feel like coming in’,

who blew us off in ten minutes after we had waited six hours to see him.

His idea was that we should disregard everything her team had said before and just do as he said,

which included his suggestion that we place Ivy (who is turning nine this year and does not allow anyone to ‘put her on the toilet’ anymore) on the toilet more often.

The nephrologist suggested Hiperex (an antiseptic that sits in the bladder) which seemed like a good idea

until we received a phone call to tell us that there was risk of kidney calcification if she took it with  Bactrim (a mainstay in her prophylactic regime)

and so it seems we are left with the immunologist’s answer  to put Ivy back on the interferon gamma and another poly saccharide based ‘medication’.

I’m not sure if anyone remembers how that went the last time we tried it.

In short; not good.

She was allergic to the lactoferrin and the gamma had her in almost continuous, violent inflammatory response.

With Ivy, it’s all or nothing.

Why is it that I am finding it hard to see the positives here?

Ivy’s freshly-returned-from-holidays doctor looked at us exasperated today and said “we just need to break the cycle of infection”.

Well, yes.

Exactly what we have been asking for, we said, having just spent the last week in the hospital with another bout of pyelonephritis

but is doing the same thing,  just a year later, going to do that?

I doubt it.

Why is it that David, the kids, the nurses, anyone who isn’t a doctor can see that?

Are they just the eternal optimists of this world, I wonder.

Some days are very frustrating

and then there is this:

The bin is right there.

Apparently I’m the only person in the house who can see it.


I just want to be…

“I just want to be a normal kid,” she said after she had pulled her naso-gastric tube out in a sad moment on Sunday,

amongst the teenagers who were sleeping over for Lily’s 16th birthday.

“I want to be like everyone else”.

“but what does that mean to you, exactly Ives? What do you think is normal?”

“You know, not having to go to hospital and stuff,” she said as she curled into my lap,

“not having to take medicine all the time or have things that tell everyone that I’m sick.”


“I just want to go to school and go back to dancing and not have to worry about when I will have to go to hospital again”.

“I want to play with my friends because what if one day they don’t want to wait around any more and I don’t have any left.”

“I want to be tall.

Like Sophie.

Like Lara.”

“You know – normal”.

We left the naso gastric tube out.

It was the best I could do for her right then and there – offer her that little piece of similarity, that freedom

because I can’t give her what she really wants.

Not yet, anyway.

On Thursday we are going down to Westmead Children’s Hospital

to attempt to convince more doctors that they should listen to our ideas on creating some normality for our girl.

A long term line,

a long course of IV antibiotics,

a chance to stay out of the hospital,

a chance for all of us to live.

What are our chances, I wonder.

We’ve been asking for change now steadily for over six months, probably more like a year.

June 2012 was Ivy’s first urinary tract infection, consequently the last time we went to Westmead as well.

Since then we have had several bouts of pyelonephritis and two cases of renal failure along with constant infection.

Her school year consists of three full days and a dozen half days to date.

She can’t keep up and will need to repeat because of it.

Peripheral access is so poor that every time she has an admission the doctors all draw straws when it comes to cannulation

and she is needing a surgical procedure to place a temporary line -

it’s all so traumatic.

For Ivy

but for our family too.

The medical team want us to work on long term goals for the chronicity of her disease

but how can we do that when we are always consumed by the acute infections.

How can we help her to reduce medications and work on voiding dysfunction and improve her rapidly decreasing iron and vitamin b12

if there is never a period of wellness.

At what point do you say that the benefits of our proposal outweigh the risks of Ivy’s current situation?

I know, I know – I’ve said it all before but

I’d love to be able to come back from our appointments and say,

“okay Ivy. Okay, baby-girl.

Today I can give you your  normal”.