Posted 8/29/2016 1:24 AM (GMT -6)
Thanks for your replies:)
We've had a busy few weeks with summer holidays and a camping trip with 4 kids and surprisingly, I've managed to stay much calmer than I would have at home. There's alot to be said for sleeping on the floor in a muddy field in a tent, lol.
I've been able to spend some time sifting through all the rubbish in my head and I think I need to deal with the things that I know I can do something about.
It's clear to me that my anxiety was triggered by my daughters surgery, and the weeks of rehabilitation that followed.
They knew she had ongoing health concerns and was on alot of medication. They also knew she was awaiting a synacthen test to check that her adrenal system was working. Had they looked further into it, they may have possibly considered that her adrenal system wasn't working as it should be, so the surgery should be delayed until the endocrinology team had given her the all clear on the synacthen test.
As it was, she had the test probably 6 weeks following her surgery, once she was off the morphine and able to mobilise which came back that her adrenal system had stopped working.
Apparently this is much like Addisons Disease and would have meant that she'd have needed extra steroids to prepare her body for the trauma and a stay in a high dependency unit following the operation, and extra care during recovery.
So all of that stress, all of that pain for her could have been avoided so easily had we just realised.... if I'd bothered to look what the synacthen test was.... if I'd shouted louder to the doctors that she was due to have it, he may have realised that it wasn't the right time to do it.
And to make it even worse, the surgery will fix her legs as she grows... so as she gets taller, her legs will straighten. But it's only now we have the results that we know that the adrenal insufficiency will probably mean that she won't grow any more and her bones will be much weaker than they should be.
So we did it for nothing. And I feel that's my fault.
I now have to give her a steroid every 6 hours throughout the day and night and just hope that we can wake her adrenal system back up.
Because her illness is so complex the big children's hospital use her for clinical studies and research and she's due a day in hospital on Wednesday to see how the long term steroids may have affected her neurologically. This has all stemmed from her being kept on her meds for longer than was safe (from age 7 to age 12) I know they need to learn and I know that they need children that are willing to be part of these clinical studies but it's all stress to add to my already heaving pile of anxiety. But then I try to rationalise and be supportive of her wishes to help them to make sure these things don't happen to other children in the future.
I'm sorry I've gone on, but I've not said any of this out loud. If you've managed to read it all, Thank you for hearing me.
I feel guilty. I feel I've failed my baby. And I feel better that I've said it :(