Wednesday, August 31, 2016

{A little morning excitement...}

AG woke up earlier than normal screaming the weirdest scream we've ever heard from her. I gave her some Tylenol thinking that lying flat all night may have bothered her pressures. Then, she laid down on me and really didn't want to move at all. Within 20 minutes, she was projectile vomiting everywhere.
There's a lot we don't share about her past because, well, it's just her story. One day we will share it with her and then it will be her decision what to share and what she wants to remain private.
But, one thing I can tell you is that this child learned from a very early age how to stop herself from throwing up. In 2 1/2 years of her being ours we have never once seen her throw up...and she has been nauseous for over a year where we hear her stop herself. She did this exact same thing on morphine an hour after brain surgery so those roots are deep. For her to throw up where she cannot stop it was BAD.
Plus, she felt horrible feverish but when I took her temp there was none. So weird.
Immediately, we headed out the door. She threw up again in the car and was very lethargic. She varied between screaming and wanting to fall asleep. I stayed in her face telling her how strong she is and how much Jesus loves her and how she had to stay awake and stay with me.
Thankfully, we had been warned. Her surgeon knew she was at a higher risk of aseptic chemical meningitis because she bled more than normal with her venous lake. He had already anticipated her body having this aftershock like effect and medicated her on steroids immediately after surgery for a week. {Keep in mind: this is totally different from viral or bacterial meningitis. This is the meninges in the brain responding to the trauma.} The thing is that you really don't know when it's going to hit. Typically within the first week post-op...but hers lingered since she bled more and finishing the steroids for it on Monday meant that once they were out of her system, the meningitis would hit again.
Obviously, this is what we were hoping for but the reality is that we have been given a LONG list of things to watch for...risks that go along with brain surgery....and the cerebellum having a patch on it...and so much more. So, as much as I was praying it was the meningitis, we really did not know with the other huge risks that she faces and after having lost a child so suddenly once before, I have a hard {impossible} time not thinking the worst.
I called her surgeon's office at MUSC as soon as we got to the ER and he had called me back within 2 minutes and was on the phone telling the ER doc what to do and how to assess her. Amazing. He also emailed me twice more throughout the day yesterday to check on her. He had her restart the steroids seeing that all signs were pointing towards the chemical meningitis. Although not fun, it was definitely the best of the risks we were up against.
As my mind starts to process all that's happened the past two weeks, I am realizing more and more how He has prepared our family for this journey...
And once we got the steroids in and working, we Facetimed with two very anxious brothers who were so happy to see their baby sister laughing and eating a sucker while we waited to be discharged.
It could have been so much worse. It still could be. But, I really don't think that brain surgery or ever more than a breath from Heaven. The greatest gift is that we have today.
So...moving forward...we are doing the steroids again and tapering longer this time. Next Tuesday we will check her blood to make sure her adrenal gland kicks back in since she has been on this longer than we'd like and pray that we don't have to spend another morning in the ER. These steroids though...she's eating like crazy, refusing to nap and has quite a temper! The sass is on overdrive! 

1 comment:

Anonymous said...

Wow! When you sleep, I think you forget more about what it means to be strong than some people learn in a lifetime. Keep crushing it.