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Sit, sit, stay.
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.
The two stickers of awesome.
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*

















