You know how I asked the paed to run the IVIG in slowly?
I wanted 6 hours,
the paed wanted 4,
it went in over 2.
Yeah 2 hours.
Her observations were all good and I didn’t say anything but I was worried that there would be a delayed reaction.
Still we were discharged yesterday with high hopes. She had been well hydrated and pre medicated with Neurofen.
When we arrived home, Noah was in alot of distress.
The day had been hot and windy, so by the time I drove into the driveway, he was wheezy and working hard to breathe. I dosed him up with prednisone (the great hyper drug) and topped him off with two nebs, one after the other.
He was relieved but tired.
He was angry with me, that I had not been there for him and so when I put him to bed he cried,
“No, I don’t want you, I want my Daddy, you are not my best friend!”
My heart shattered into tiny little shards and lay scattered on the floor for me to cut myself and bleed as I walked away to get his father.
A friend sent me a message to tell me her baby had died just as Noah proclaimed my betrayal and I cried a sea of tears for her
and for me because I had just been punched in the guts by my own 2 year old son’s words and because the last three days had been stressful and I really just wanted to come home and be taken in and embraced in love but I had to come home to more sickness and worry instead.
I thought of my friend and her small family and how her life would never be the same again. I felt so sad for her.
I had not paid much attention to Ivy who was still on her post infusion high but by the time I got her into bed, her breathing was up too and she was sweating profusely.
When she lurched into our bedroom I knew that she was having a reaction to the IVIG that had been run in over two hours, instead of six.
Her temperature was high so I gave her panadol, only to be confronted with a terrible febrile convulsion.
Even though they are self limiting and do no damage, they are one of the single most frightening things I have experienced when Ivy is sick.
When William was with us, he was fitting all the time and I think this memory throws me when Ivy does it.
You know, a little PTSD on top of the crazies, is always good.
Her little arms clasped into small fists, jerking uncontrolably and her head, rolled back. It shocks me every time.
It’s just too much, especially in the wee hours of the morning.
The post - ictal phase was over by 2am. She had roughly come in at 11pm.
Noah had lumbered in with his sister, wheezy again but high as a kite on the prednisone and feeling the need to be awake… very awake.
He proceeded to fuss and fidget and kick and chatter, while Ivy cried the most awful high pitched cry and complained that her neck was hurting and the panic rose in my throat like acid.
She was talking about bees that were coming to get her and waving her arms to shoo the invisible stingers away.
I was scared.
I woke David and we dosed her again. Her temperature now 40 degrees, I was ready to take her back to the hospital.
Noah was flailing his arms and legs around the bed in some whirring helicopter blade madness and decided it was a good time to want my attention, yelling to me that he had changed his mind, I was now his best friend. (You can laugh here, in hindsight, it was hilarious.)
With one last bargain to the heavens, I took to the girl with my handy antipyretics. I told myself if her temp had not come down within the hour then I was taking her back to the hospital, where they could all see the effects of the too fast infusion in full swing.
Thankfully, her body gave in and the fever and rigors broke and she slept.
The boy had relented minutes before, so we all rested.
Finally.
An hour later, Noah declared that it was time to get up and the day began.
The girl, post misadventure, was fragile but mostly okay and as I looked at her with weary eyes I knew that the worst was over.
In twenty seven days Ivy will be dripped to start the whole process again but I will be insisting on a slower infusion next time. Either that or the paed can babysit for the 24 hours post.
As for Noah the Pred - head, he is much calmer today.
