“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.
“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.
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”.