Tiff | Three Ring Circus

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When charity really does start at home.

May 6, 2012 | Author Tiff

Yesterday I put up this photo on my Facebook page:

with this status update:

This morning we told the kids that it would cost around $2000 to buy the pump for Ivy’s subcutaneous immunoglobulin

(Which our health fund should reimburse us for after purchase) and that things would be a little tighter for a while.

Instead of grumbling about how much they would miss out on they got a jar and then fished through their piggy banks to donate to the pump fund.

$24 so far.

It just goes to show you how amazingly giving and understanding kids can be.

P.S. I love my children.

What happened next was a cascade of amazing friends and family wanting to donate to the “pump fund”.

Can I just say here that the kindness and generosity of people leaves me in awe, every single day of my life.

That people want to help others, when I came from a father who was constantly telling me that

he ‘did it tough’, so I should have to as well and having lived like that

and struggling with accepting help from anybody,

it just blows me away.

Somehow it feels wrong to accept.

Tonight I have listened to all of the different perspectives, read a million offers of kindness and still I cannot wrap my head around it all.

Ivy will need a pump for her subcutaneous immunoglobulin.

The hospital will hire one out to us temporarily and supplies should cost around $90 to get her up and running.

We need to buy a pump, pay for it up front but our health insurance should reimburse us eventually.

Truth is, we don’t have that money right now.

In fact, after the last eight to nine weeks of hospitalisation, we find ourselves in a very big financial hole

and it would be so easy to say yes, in some respects

but I don’t think I could

or should.

I honestly meant nothing more than to tell the world how proud I was of my kids.

A teacher at Ivy’s school suggested a trivia night and that is something that I could see as an opportunity to give something in return for the donation.

I thought if I could ask friends to donate goods and services that would be okay.

I would feel okay with that

and then one friend said that if I saw a need and I could I would help (which is true)

and then another friend suggested giving the money raised to a charity, once we were reimbursed for the cost of Ivy’s pump,

which, when I thought about it is a fantastic idea.

Pumps for the subcutaneous program here in NSW are few.

What if I could raise money for more pumps, so more kids like Ivy, who don’t have health insurance, could then get onto the program.

That would be wonderful.

Pay it forward in some way.

I’m still not sure what I’m doing.

I’ve said yes to the trivia night

and people are already offering things as prizes and things for raffle.

Aside from thank you, I honestly don’t know what to say or how to express my gratitude.

Friends are asking their friends and once again, I get the feeling that we could achieve something remarkable, something extraordinary

but what do you think?

Would you donate your craftiness for a cause?

If you were in the position where you needed help and people were offering, would you?

I know when I started Team Ivy and asked for donations to the ward that Ivy stayed in you all did amazing things in only three months

but that was different – it was for someone else, a cause,

a way to help others.

This seems like a charity all too close to home.

Posted in grateful, immune deficiency, Ivy - girl, Pay It Forward, people helping people | Tags: charity, helping other people, paying it forward | 33 Comments »

Sit, sit, stay.

May 4, 2012 | Author Tiff

The last two days have been long and stagnant.

Not a lot has changed for the girl and her abscess problems.

She still has pain to the touch and she is still unwell

and there has been a lot of sitting and waiting for something to happen.

Dave calls it the sit, sit, staaaaaaaay phenomena,

whereby the doctors make you come to them and then tell you to wait.

Wait for them to grace us with their presence,

wait for the illness to declare itself

wait for something

but if you do and you are patient then like a good dog, you shall get your

meaty treat at the end.

+++

We received the call late on Wednesday afternoon

that we were to present to the children’s hospital,

back to the parent care unit.

We thought for needle aspiration and treatment of the abscesses.

I admit to having a full meltdown and yelling incoherently

at Dave about not wanting to go and not knowing what to expect

and that I fully believed that I would take Ivy there

only to be treated poorly and hurt.

I’m sure I accused certain doctors of not thinking anything through.

I remember blathering something in a teary tirade about

how they didn’t know her, *really* know her

and that she wouldn’t cope without pain relief if they had to stick

any kind of needle into her

and had anyone bothered to tell them that.

Did they know about the midazolam rule?

I think David calmly told me that it was actually a hospital that we were

going to and most hospitals knew about midazolam.

I have no excuses for my bad behaviour

except that seven weeks in a health institution can send you quite mad

if you let it.

Yes.

When we arrived we met the country liason nurse and then we met

with the child life therapist, who had received a letter

from the play therapist from our hospital

with strict instructions to look after Ivy.

I love our hospital.

I love the people who work in it.

I love that even from over 200kms away, they are pulling for the small girl.

After we were admitted to our room we met with the immunologist

and after that there was nothing for the rest of the day

and not much today either

That’s why it’s been long.

+++

The thing is the immunologist hit us with news straight up.

A specialised blood test that was done in February

had come back positive for a specific mutation

of an immunological pathway (IkBa/NFkB)

and while that doesn’t mean a lot to any of us

(aside from a wicked headache as I try to read the literature available to me)

for Ivy it means a definitive, “put your finger on it” diagnosis,

new interest from the doctor because it is ‘quite rare’

and that allows Ivy to be approved for a new medication

called Gamma Interferon.

I don’t know a lot about Interferon yet

but I do know that it will help with fighting infection

from a macrophage point of view.

Macrophages are cells that come in and mop up infection,

which Ivy’s don’t do.

The girl has lazy cleaners apparently

and this injection that she will now have three times a week

will whip those macrophages into shape.

Hopefully.

She had her first injection today.

She was so very brave.

On top of that the doctor has finally approved Ivy

for subcutaneous immunoglobulin.

This is a major thing, my friends.

It means we don’t have to find a vein every three weeks for cannulation.

It means that she will have a pump at home,

a small butterfly needle under the skin

and an infusion once a week

and, okay it will be more frequently

but the good thing is that she could go to school,

come home in the afternoon,

be hooked up to her pump for a couple of hours and watch a DVD,

play with the sisters or Noah,

have a snack and essentially have a normal life.

It’s a good lifestyle move for the girl

and it will keep her out of the hospital more.

At least that’s our hope.

We are still waiting for movement on the abscess front

but at least we are making progress in other areas

and that is our reward for being patient.

No pun intended of course.

Addit; We’ve been given gate leave until Sunday afternoon, when we will return for theatre to have the abscesses drained again.

The girl is so very tired and feeling far from herself but we are glad for the opportunity to be home.

We are thankful for it.

Posted in Health, illness, hospital, immune deficiency, Ivy - girl | Tags: gamma interferon, hospital, immune pathway disruption, neutrophil dysfunction | 22 Comments »

Just with fewer options.

May 1, 2012 | Author Tiff

I took Ivy back to the paed, with the hope that he would do something for the girl.

48 hours after ceasing the IV antibiotics and having no coverage at all, her shoulder had become sore and swollen again.

her temp hovering in the low grade fever mark.

I wanted him to treat her.

Do something.

Anything.

She was in pain and I could see she was becoming unwell.

I could see she wouldn’t be able to cope for long.

Instead of doing something he told me that Ivy would have to go to Westmead Children’s hospital and be seen by the specialists there,

although he had not spoken to any of them, had not organised anything of the sort.

He wanted to send her away with nothing but I wanted some oral antibiotics to cover her at least until he had keyed something up with Sydney.

So he wrote out a script and I left angry and upset.

He said he would call with information about admission.

When he called he offered up three options.

The first was to go to the Parent Care Unit (when they could find space for us) and wait until the doctors could find time to see Ivy.

Of course, the immunologist would not be available until Wednesday and no discussion with any other doctor had taken place.

No other doctor in Westmead knows Ivy’s history

and there was no promise of there being a room available at that stage anyway.

The second ‘choice’ was to just drive two and ahalf hours and present to the hospital’s A&E and hope that they would see that Ivy was unwell and needing assistance.

The third was to wait until Ivy was acutely unwell and then to present to our hospital and following that be transferred down to the Children’s hospital.

All of those options don’t sound any good to me.

All of them involve Ivy being unwell and waiting around at the convenience of the doctors.

I’m not exactly sure why the paed thinks that any of those would be okay with David or I,

I mean, who would willingly watch their child go downhill and become sick?

Who would want that for their child?

The paed said it was his job to find answers so that Ivy can be treated properly and that is true

and that he is out of his depth and needs the opinion of other specialists and that is true too

but I think that, if he chooses to see himself as only Ivy’s general paediatrician then it is primarily his job to treat Ivy and maintain a level of wellness,

rather than letting her deteriorate.

He should treat first and then seek answers,

not seek answers before he treats.

That is called withholding care.

That is unfair on Ivy and it is taking away her basic right to health.

Ivy is not being treated as a person.

She is being used as a lab rat.

People are saying we should go to the media. (On a side note, I have no intention of doing that – I need to be able to work with ivy’s doctors for a long time and media attention would only put a greater strain on things)

They are saying we should demand care for the girl

but what can we do?

If her own paediatrician will not treat her, will not agree to stopping the process and allowing Ivy time to be healthy and have some kind of normality

then what hope is there?

David and I spent a very long time on the phone with him, trying to get our heads around what he was saying.

I couldn’t quite believe that he was advocating for Ivy to wait to become so unwell

but he was.

He said if we brought her in to our hospital, he would treat her but that was not his ideal.

That by doing that we would be masking her symptoms and delaying the process.

We are masking her symptoms anyway by partially treating with oral antibiotics,

by pushing up her steroid (which I did)

I feel so sad for Ivy.

I feel sad and frustrated and tired that we are always living on the edge like this;

that we can never take a breath and know that we will all be okay and together for any given amount of time

that Ivy will have wellness.

It’s not fair on the girl, it’s not fair to the other kids and it’s not fair to David or to me.

Her chest is more swollen now, her temperature is still low grade

her heart rate is up and down

and her pain, oh her pain

but she is not emergent, she is not emergency room worthy

and so we have to wait until she is.

I am angry with the paediatrician.

I am angry that he says he is stepping up when all it feels as though he is doing is passing the buck

and I am scared

and I feel as though nobody in on our side anymore,

that the last seven weeks were all for nothing.

Nothing has changed.

Not one little thing.

We are back to where we started

just with fewer options this time.

Edited to add; Now, with a day on my side to think things through I know that the paed is working his hardest to get Ivy all she needs. He is in a difficult situation, trying to navigate a whole other hospital on Ivy’s behalf. I was very angry and upset last night but with time I have come to see that the paed is not the enemy, he is an ally who is in just as difficult position as we are.

Posted in doctor related posts, Health, illness, hospital, immune deficiency, Ivy - girl | Tags: doctors withholding care. | 33 Comments »

The two stickers of awesome.

April 30, 2012 | Author Tiff

There is a lot to be said for having a supportive person with you

when things are not going well at the hospital.

It makes coping a whole lot easier because there is another person to help you shoulder the worry.

Unfortunately that is not often the case.

Dave has to commit to work or the other children and so I am left to cope with whatever comes my way on any particular day

and I am the first one to admit that I am not a fun person to be around when Ivy is sick.

The stress and the worry dull my personality to a minuscule of what it actually is.

Often times, it’s easier to stay quiet than to open my mouth because then all that comes out are tears

and emotional waffling

that doesn’t really help Ivy or me and certainly leaves the doctors feeling uncomfortable.

I do, frustratingly for many medical staff, ask a bucket load of questions.

When Ivy is in my care, she is the same.

She buries herself in colouring.

Sometimes she asks me to colour with her,

sometimes not.

We go through the motions of each day and save our real feelings for home

where we can laugh,

be angry,

cry,

yell

or be silly

without fear of judgement.

Except when David comes to the hospital.

When he’s there Ivy comes alive.

He clowns around with her, plays wild, imaginitive games with her

and generally misbehaves.

The nurses and other medical people always comment on what a difference they see in Ivy when her father is with her.

On Friday, after the removal of Ivy’s hickman’s line (one of the least stressful procedures I have ever gone into with the girl),

which Dave was able to attend,

we had to follow it up with an ultrasound of the chest wall, where the abscesses had been removed.

The ultrasonogrpher gave David the job of distraction (which Ivy never needs anyway)

and he set about doing what he does best.

She giggled and smiled her way through the test and as we were being escorted to the waiting area the technician started telling everyone how wonderful Ivy’s father was.

Which he is

but right at that moment in time, after having done seven horrible weeks in hospital with Ivy,

having held her down for blood tests and cannulation and staying up all night for nights on end, worried sick for my baby

after fighting with doctors and seeing her through four surgeries on my own

soothing her when she had pain, making sure she got all of the things that she needed

I just felt hurt.

The sonographer brought out two stickers and stuck them to Dave’s chest

‘because he was awesome’.

Which he is, of course.

He is awesome

but nobody ever gave me stickers and told me I was doing a good job.

It’s just expected of me.

Which made me think;

nobody ever thanks me for anything I do in the home either, even though I always say thank you to them.

When the kids complete their chores, when they help with something – they are thanked.

If David looks after the little kids for a few hours so I can have one on one time with the others, I always show my appreciation

but it is just expected that I will do it.

If he makes dinner one night out of seven, everyone tells me how lucky I am

but nobody tells him that he is lucky to have me

and it’s the same with the hospital.

I’m there day in, day out, doing all of this awful soul destroying stuff

without expectation of any acknowledgement whatsoever because Ivy is my daughter

and I would do anything for her

but none is given either because it is expected of me -

it just is.

I wonder why men are continually praised for things that are really just part of being a father,

part of being a husband and partner,

part of being in a family.

It hurt a lot when he was awarded the two stickers of awesome just for acting like a father should

but of course, there was no point in making a big deal of it

because then I would just be labelled bitter and small minded

as well as all of the other things that the hospital staff presume me to be.

* Disclaimer : No Daves were harmed in the writing of this post. This is not to say my husband is anything less than amazing – because he is. Amazing.

He held down the fort at home in a way I’m not sure most men would be able to.

I acknowledge that he is, indeed, awesome.

He has read this post and he is fully okay with my publishing it. He is in no way, shape of form hurting because of what I have expressed here.

He asks that nobody feel pressured to acknowledge his awesomeness in the comments below*

Posted in coping, cranky, hurting | Tags: assumptions, expectations of mothers and fathers, presumptions | 28 Comments »