A few months ago Ivy, Noah, Maddy and I had the pleasure of meeting our health minister for NSW.
Now, this is in no way a political post
but it was an honour to go
because we were there representing the patient population at the official opening of the paediatric pain service at our hospital.
The first in NSW and Australia.
I was able to talk about the amazing work that had been done to help Ivy overcome her pain and fear associated with trauma
and the extensive therapy, organisation of Ivy’s medical team and care that has been allowed us, as Ivy’s family.
Jillian is very passionate about everyone having adequate pain relief and has a great understanding of how being in pain can alter the course of recovery.
She believes in the Pain Team, which is very good news for kids like our girl.
I’ve thought about this post for a long time.
I knew that I could physically show you the difference that this remarkable team has made to Ivy and how far the small girl has come
but I have wavered back and forth on the appropriateness of it.
Sometimes seeing is so much more powerful than reading or even listening.
When we first met the pain doctor we were at a point where Ives would be so distressed and her fight or flight response so acute that she would fight
every time a needle came near her.
We worked out and pin pointed the exact moment when everything just became too much for the girl
and then with the help of our awesome play therapist
and the team
we started the long process of what we came to think of as “reset”
and slowly, slowly, things began to change for all of us but especially for Ivy.
The first recording that I am putting here is sad and overwhelming for me, as Ivy’s Mum
but it gives you an inkling of what we all had to go through twice a week for subcutaneous immunoglobulin, every second day for gamma needles and every night for growth.
It’s a bit over nine minutes long, which is long, I admit
but what you should know is that this particular infusion day started an hour before I was even able to get the butterfly needle near her
and continued to be just like this for another hour.
Please don’t watch it if you are going to make comments about my being cruel or awful for putting it on the internet.
Please don’t watch it if it is going to trigger phobias about needles or medical treatment in any way.
I’m putting it here so you can see the difference in the next video. If there is any negativity surrounding it, I will take it down.
Within the year that we have been working with the Pain Service we have gone from having general anaesthesia for infusion
to heavy sedation
to light sedation
and finally to using nothing except some lignocaine (numbing medication)
and Ivy’s own ability to relax herself and let her body do what it has always been capable of doing.
I may be totally biased but this kid of mine – she’s amazing.
Yesterday we did our first subcutaneous immunoglobulin at home in over a year
and it was really really…
for all of us
but especially for the girl, who was incredibly proud of herself.
This video goes for seven minutes but it was only seven minutes from the point of needling to the beginning of the infusion,
which consequently only took twenty minutes.
We have definitely come a very long way.