Posts Tagged ‘childrens hospital westmead’
I have seen a lot of hospital in my time as a parent
but never in my life have I experienced anything like the treatment
that Ivy (and I) received today.
For a start we had waited for doctors for the last five days
to come and consult
but they just never turned up,
our weekend of gate leave cut short by a day because the anesthetist
failed to show up at all on Friday, so we were made to come
in the hope that someone would see Ivy on Sunday.
So, this morning I knew that Ivy was on the emergency list
for aspiration of the abscesses
but we had no time for theatre, we had no plan and
I didn’t even know whether to keep her nil by mouth from midnight.
At around nine
(just when we were on our way to pathology to have bloods taken)
the anesthetic registrar turned up and
after being unable to find her notes,
asked me a bunch of questions about Ivy.
I told him she hated the mask
and that she was hard to cannulate
and that she needed midazolam as a pre med.
I told him she needed hydrocortisone just before she went into surgery
and that she had just spent the last eight weeks in the hospital
and was now frightened of anything to do with needles,
procedures and surgery.
He told me that he understood and, although he was not the doctor who would
be present for the procedure,
that he would chart some oral midaz for Ivy.
He had no idea what time she was going to theatre
but encouraged us to go and have her bloods taken.
Which we did
and then we had a consult with the immunologist.
As we made our way back to the ward
I received a phone call telling me that surgery were ready for us.
When we got there all hell broke loose.
One nurse said she had no idea what was going on,
another told me they had been looking for us for hours
(clearly that was a lie)
and then the theatre nurse turned up.
She took it upon herself to yell at me and tell me
that I had kept everyone waiting and that I was lucky that they hadn’t
cancelled Ivy’s place.
Then she said that Ivy should have a pre med
and that it was my job to insist,
that she should have been cannulated first
and then had bloods while she was asleep and that she couldn’t have
anything to help her to relax now because there was no time.
We’d had no time to prepare Ivy
beyond the knowledge that she was to have surgery today
and all of a sudden people were poking her and prodding her
and pulling her in every direction.
Of course she stared to cry
and I did too.
The very unsympathetic “paediatric nurse” then told me
she didn’t have time for our upset and that I needed to get it together
for Ivy’s sake.
That made me feel so angry
because if all of this was for Ivy’s sake
then there would have been a good plan
and kind nurses
and doctors who actually turned up on time
to find out all about her little quirks and her allergies and her needs.
Instead the nurse told me if I didn’t like what she was offering I could refuse
and the surgery could be cancelled.
After waiting for five days inside the hospital
and three days before that at home for there to be any movement at all,
I told her that we would be going ahead.
Ivy was hysterical.
I carried her to the anesthetic bay because there was no bed ready
and no porter to push our invisible ride
but before we left the ward we were informed that we were being transferred
to another ward
and that our luggage would be removed from our room
and locked in a cupboard for collection later on.
None of this had been discussed previously with me.
In our own hospital this may not have been such a big deal.
I know it almost as well as the back of my hand
but we were a long way from home
I didn’t even know where the operating theatre was,
let alone a different ward.
In the anesthetic bay they made me hold Ivy’s arms down
so she wouldn’t fight the mask,
all the while telling me what a waste of their time this all was.
My girl did not get any of the things that she needed for surgery
but what I found so utterly disgusting is how cruel they were.
They call themselves a children’s hospital,
a place that is supposedly geared towards looking after tiny humans
and yet not once was Ivy taken into consideration.
The doctors all did what was best for them.
The nurses all looked after themselves
but nobody looked after my girl.
It was cruel and mean that they let her get that frightened,
that they had no set plan,
that everything was so disorganized that when it came time,
Ivy was petrified.
Even the immunologist had no idea that we had been moved
to another ward following the procedure.
Luckily, after recovery, which was also less than friendly
the nurses on the surgical ward were nice enough
and Ivy, for all intensive purposes, did well post operatively.
There is more but this post is already long and ranty
and I need to step back and reassess all that has happened
and try to find the good in today.
I am tired and so ready to go home,
which will hopefully be tomorrow
and let me tell you,
tomorrow can’t come soon enough.
1. Accept all things for what they are.
2. Make the best of the worst.
3. Laugh often.
4. Family is the best cure for the hospital blues.
5. Friends will help you to see the sun through the clouds.
6. Listen to your heart, go with your gut.
7. Allow yourself to feel.
8. Kindness is everywhere, if you take the time to notice it.
On Monday we arrived at The Children’s Hospital at Westmead.
We met with the immunologist, who gave us a rundown of what would be happening with the girl.
She spoke with Dave and Ivy and I for a long time
and then she did a scratch test
followed by a dose of the lactoferrin.
It was a fraction of the original amount – just 1/100th of the 1gram she was originally prescribed.
Within twenty minutes, Ivy was red and itchy and grumpy.
There was alot of waiting on the first day,
alot of not knowing where we were
or what we were doing
and lots of tears – hers and mine.
There was also a fair bit of crazy, overtired giggling towards the end of the day.
It helped to ease the nerves.
(There are some iphone photos that have been included here. Leading me to believe that I need to improve my iphone photography skills a lot)
The room was quite large, with lovely artwork on the walls.
After an adjustment period, Ivy set about creating her own drawings.
I really love child inspired paintings.
Perfectly imperfect (my new favourite mantra).
The first day was far from smooth.
On day two the immunologist halved the dose and then halved that again.
It only seemed like a few grains of the fairydust, at 1/400th of the original
but the girl did not react.
Grandma arrived and she happily coloured in.
The immunologist was quietly excited and tossed up whether she would dose Ivy again that night.
At one stage there was a knock on the door,
some old friends came to pay a visit
and within minutes of their arrival
the clown doctors came.
(I LOVE the clown doctors).
Ivy and I laughed so much.
I’ve not seen the girl giggle so hard in such a long time.
We both needed that
and I was so thankful
that we found some happiness.
Part of the reaction for Ivy is a terribly upset stomach
and unfortunately her afternoon was filled with this.
The immunologist decided to leave the girl alone,
which I was very grateful for.
By Wednesday we had kind of found our feet
which was just as well because we needed to travel around the hospital a bit for tests.
I felt a bit strange being there – my heart racing and teary too.
Ivy took to the place like a duck to water though.
I learn from my girl every single day.
and twenty minutes later the girl was puffy, red and not in a good mood.
We had to wait to make sure that was the extent of the reaction
but after that we were given gate leave to celebrate Malachy’s 13th birthday.