It’s funny how much things can turn around and change in a week.
Today marked the first day that Ivy has had her infusion pain and anxiety free -
under a general anaesthetic.
As it turned out – it was pretty amazing.
Everyone from the nurses on the ward
to the staff in theatre
to the gentle anaesthetist who looked after Ivy with such care
to the kind surgeon, who assured me that I had made the right decision and that no harm would come to my girl while she was on his watch,
were kind and supportive.
I could not have asked for better
and the infusion itself
was such a non event -
after so many months of fighting
that I was able to just sit
and stroke her little hand.
It was the least stressful needle I have put her through.
Last week I never thought that I would consent to such extreme measures
but after we attempted everything again,
it was clear
that nothing was ever going to be enough
unless we gave the girl a true break.
I need to be able to give Ivy the best chance of overcoming this anxiety.
After the great group doctor edict of 2013
the lovely pain doctor verified that she thought a hastened elevation of treatment would be in Ivy’s best interests
and so we tried lignocaine (local anaesthetic)
and hyalase (a medication that disperses the infusion further under the subcutaneous tissue)
and sodium chloride (which neutralises the ph of all of the above),
along with all of the other things we’d already added in.
The infusion itself was a hundred times better,
with less pain
and less of Ivy gripping the sides of the lounge until her knuckles were white
but the anxiety was worse than ever before.
What was already an hour long panic ’ritual’ that we have been refining over the last six months
was extended by another twenty minutes at least
and that was only at the point of positioning the girl,
preparing the site
and placing the needle.
There was a whole lot of stuff that went on before it
and so the decision was made.
On Tuesday when everything was finalised and we had a time locked in
I suddenly faltered
because what I was about to do was extreme
and it was a complicated regime of medication to get to the point of needling
but the cracker for me was their need to run the full dose of immunoglobulin in quickly.
I may have lost the plot a little (lot)
and told the paed and the lovely pain doctor that I had changed my mind.
With twenty four hours and a whole bunch of them sleepless,
I settled with the fact that I needed to do something
and made peace with it.
Ivy has been on the Lovan now for just over three weeks
and she has been spending time with our awesome play therapist.
Tomorrow we are meeting another new doctor from Psychiatry (another catch my breath moment, when he was suggested as an addition to our ever growing team)
the paed and the lovely pain doctor have just been amazing
and you know,
I think I can see things starting to change for the girl.
She is calmer somehow -
and she is even starting to come out of her shell a little.
She loves the pain doctor.
I’d have to say there is stiff competition for the paed
for pole position in her heart, right about now.
Tonight, even though her heart was racing and she had a bit of a fever
and despite having her infusion
Ivy seemed relaxed and happy.
What a wonderful turn around.
For the both of us.