The three weekly IVIG has been knocked back.
Don’t worry, she’ll still get her normal infusion at 28 days but I was pretty disappointed to hear that Ivy wouldn’t be going to 21 day infusions.
Disappointed but not surprised.
Instead the paed is trying her on another antibiotic, to see if we can clear up her ear infections, which have been slowly and persistently creeping back in.
It’s a two week trial and if it doesn’t work, we will have to pay a visit to the hospital for five days of IV antibiotics.
He feels that if we can clear up the ears then the IVIG may work more effectively.
Dave and I are struggling with, what seems to be, a step backwards.
A band aid measure.
I thought the point of moving to three weekly infusions was to put an end to meltdown week and help with the after effects, post infusion, not to cure disease.
We were never under that impression.
Help her fight, yes but cure her, no.
The immunologist was very clear that it would not do that.
Call it a ‘tune up’ (the paed’s new favourite term), call it whatever you like, it’s still five days in hospital, with a child who is not acutely unwell, a husband who is in training for the projected week of confinement and family commitments as long as you can imagine.
It’s definitely a shuffle in the wrong direction.
Still, it might not come to that.
By some miracle this oral antibiotic may work.
It brings up many emotions for me.
Anger, for one, that, even after the last year, we are still fighting for the doctors to listen to us.
Regret that it’s like this.
Worry that I am doing what is right for everybody, trying to balance things out; what’s best for Ivy versus what is best for the family
and the old guilt feelings of letting Ivy down push in for a turn as well.
It’s that flashing neon sign;
!! Neglectful mother, can’t keep her kid well !!
I was thinking today, what if this is as good as it gets for Ivy?
Am I okay with that?
In an ordinary world, I don’t think I would be but this is no ordinary world and if I weigh things up, compare them to just twelve months ago…
Ivy has a much better life now.
After many, many discussions, David and I feel that the IV antibiotics will be just another stop gap. Her ears may dry up and be better for a while but within a few weeks the whole thing will start again.
The only thing is, the doctors don’t see it that way.
I really hope I’m wrong and this is the end of it, for Ivy.
Call it being pessimistic or call it being realistic, I can’t help but feel that this plan won’t change a whole lot for her.