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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,

maybe.

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.”

and

“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”.

 

When a blog is boring.

We’ve been in the hospital.

Day 13 today.

I won’t go into all of the nitty gritty but it involved a reluctant temporary line, an arrogant anaesthetist and several changes in antibiotic.

Also –  dysfunctional  imune and renal systems.

Home tomorrow to wait for a week before we are sent to the Children’s Hospital because nobody knows what to do any more.

Better yet, is that the two primary players in Ivy’s team are  now away

and nobody knows what is happening – they all just keep asking me

and I’ve run out of crazy pills.

It’s deja vu in every sense of the word.

It feels like a strange kind of abandonment.

Again.

I don’t expect anyone to understand that feeling exactly but gee, it would be nice if somebody did.

Someone referred to all of this business as being  some kind of groundhog day

and that it’s tiresome (to live it  or to read it, I’m not really sure. Maybe both.)

It’s true, of course.

It is tiresome.

It does get boring.

Unfortunately, it’s life for us.

That’s not to say that there hasn’t been plenty of happy – there has,

it’s just  hard to take the little bits of good and spin them into a post

and really, aside from medically based stuff, I’m not that opinionated.

I said that when my big girls turned 18 that I would stop blogging but here I am a week later, typing away.

I am my own worst enemy.

I think I’m done and then I remember something I want to write about or photos I want to share.

Which reminds me, I should write about their becoming adults and the almost unfathomable knowledge that Lily will be sixteen on Thursday.

When I started to blog they were eleven and nine.

Another friend said that I should make the blog private  or switch off comments – until I have something better to offer the internet than just this.

It’s tempting.

It’s tempting, just so I don’t have to listen to everyone tell me that my blog is the same stuff just a different day.

It’s hard to come up with good writing material when all you do is sit in a hospital room.

I could regale you all with tales of the hospital food, I guess

or how single cut hospital sheets don’t fit well on a double bed and that even if you use two they still ride up

and how after a few days you can’t feel your back and hips anymore, so it really doesn’t matter

or how the horrible anaesthetist denied Ivy pain relief

and how I honestly thought I would hunt him down, bore a long central venous line into his body

and tell him it was a “nothing procedure” and insist that Panadol would be enough for him.

I could tell you the simple joys of having Noah for a sleep over and how the pair slept in each others arms

or how they sat for hours yesterday morning playing with $2.50 puppets from K-Mart while nurses and cleaners moved in and out of the room intermittently

and they were so focused on each other they barely noticed.

Or perhaps I could whine about lack of continuity of care and how that affects all of us

but in the end, it’s all hospital fodder – just written from a different perspective each time

and apparently that’s boring.

Don’t worry, it bores me too – I bore myself.

What I will say is this: on Tuesday we’re going home and I am going to relish every minute of it

and try not to think too much about anything at all.

 

 

 

 

 

The family meeting that wasn’t.

I’m trying to find adequate words for the family meeting

but they’re mostly illegible and sweary.

My thoughts are a tangle of angry-ness and that makes my words want to come out as a string of obscenities.

Ever feel like that?

Lip service is a phrase that comes to mind, bullish*t is another.

I mean, I knew we probably wouldn’t get far but today was just…

just…

such a waste of time and energy.

I suppose the doctors can say now that they have included us in a meeting, so we can’t complain.

We got what we wanted, without getting what we needed.

I’m going to list the proposed agenda that we were given;

* Welcome, introductions, acknowledgements.

* Treatment – where we are now and what lies ahead.

* The pros and cons of inserting another port

*How Ivy has coped with treatment so far (something many of you already know)

* What are the family’s current concerns for Ivy

*Questions for the medical team

*Things that could help communication

*wrap up and close.

 

What really happened  (or what we heard) was this:

Introductions

Ivy’s medical team giving a very twisted version of Ivy’s history, to suit their needs,

shutting us down about a port within the first five minutes

and then staring at us like we were the enemy for the next forty minutes.

The rest of the meeting was filled with David trying to put Ivy’s case forward and the doctors saying,  (and I’m paraphrasing here)

‘we don’t care about quality of life for your child. What we care about is the illness and how we are not going to stick our necks out just so she can have some normality’.

Which admittedly, we’ve heard before, it’s  just that I thought, with an advocate, we may have better luck

or that we would at least be able to have an open, balanced discussion, where we all considered everyone’s point of view.

Nope.

How hard is it to understand that we want happiness, health and home for Ivy?

Why can’t they hear what we are saying.

The three big girls left the meeting feeling as though we had been jipped.

I felt angry and despondent

and with the feeling that it did nothing to help the client/ doctor relationship

or that anything good had been achieved.

David (the ever steadying hand) thought that at least all of the nurses and support people now had an idea of what we deal with on a daily basis,

both in our day to day living and when we are dealing with the doctors.

Perhaps that’s as good as it gets.

We were offered a chance to seek a second opinion from another immunologist in Brisbane (referred by our doctors)

but

a) nobody in our immune deficiency circles think very much of that immunologist

and

b) how would a second opinion from a doctor that Ivy’s team recommend be balanced?

Anyone who has to work with medical professionals knows that they all talk to each other

and that they all have each other’s backs.

We were not offered an independent opinion from another surgeon or any other doctor who was not connected, in some way, with Ivy’s doctors.

Besides that, it’s not the team that we have a problem with – it’s the situation.

It’s Ivy’s quality of life that we are fighting for,

not each other

but somewhere along the line it seems the doctors have forgotten that it’s not about them.

It’s not about David and I.

It’s about a little girl who deserves a better life

and in achieving that for Ivy we hoped it would be better for everyone in general.

 

As it stands today, nothing for Ivy has changed.

We still have to wait until she is acutely unwell, before we can seek medical attention.

We still have to put Ivy through multiple failed attempts at cannulation if we want to be able to take her home on gate pass

to complete her antibiotic course at home,

with a 48 hour check in with the team and representation every time a cannula tissues,

which at this stage is every twelve to twenty four hours.

It means missing school and friends and never, ever having enough time to recover before the next illness comes along.

If we want, we can send her to surgery for a temporary subclavian line

but, aside from going through another surgical procedure and all of the trauma that brings,

it means we will be tethered to the hospital room for the whole of the admission.

Also not acceptable.

 

Where does that leave us?

Well, at present it doesn’t give us much hope.

We feel pretty beaten down.

Will we keep trying to advocate for Ivy’s good health?

Yes we will

and while we are, we will make the very best of things for the small girl and for our family.

Nobody can take that away from us.