So, find myself waking up a lot worrying. I worry by nature anyway, but I can't seem to get comfortable. I know the "plan" is that Olivia needs surgery. But I watch her run around doing so well a lot. Yet, the images tell a different story.
She woke up at 2am screaming about her neck hurting (classic chiari pain in the back of the head/neck area). She always complains at bedtime. Going to sleep is also an issue. Every night constant "my headache is burning" "I have a burning headache". Seems like its harder and harder to get her to sleep as time goes on. Used to be wear her out without a nap all day she would fall asleep faster. Doesn't work so well anymore.
Also, I have made a decision to go ahead and see the doctor in Dallas. The appointment had been pushed off to Dec 3rd. I feel like I need a confident plan. The neurosurgeon in Austin was wonderful. However, he only offered 50% hope for the syringomyelia. He also really wants Abri to be decompressed because he feels that her life will be riddled with headaches and medications that will quit working and the lifestyle adjustments of not moving her neck certain ways won't always work.
To add to the confusion, the neurosurgeon in Oklahoma called last week (yes thank you for getting in touch with us 2 months after the MRI). So, he feels Abri is just fine and that Olivia is not. He is willing to wait and watch Olivia because he stated that he "found nothing on her neurological evaluation". However, I remember he really didn't do anything with her. Not like the doc in Austin. He said she really needs to be decompressed and that basically her entire spinal canal is full of fluid. He didn't offer an outcome that I remember but I don't remember asking. He does use an over the counter patch for the dura (which we are not willing to do at all) so that doesn't work for us. I didn't burn any bridges and just told him we would be in touch. I doubt he will call us back anytime soon looking at the track record :).
So, at this point my mind tells me to wait until summertime. 1. It won't be cold and flu season in the summer and with skull and brain and spinal canal surgery, seems important to not be coughing while in recovery. 2. Our insurance will be better (not because of Obamacare but because we will be on a more preferred network and because AFLAC will kick in for the hospitalization).
I'm learning more everyday. It is so difficult because there are SO MANY stories of people who have waiting and their child has suffered severe consequences or even died from it. The countless stories of people having surgery and still suffering is just as cumbersome to read about. Certain days I put this story away and try to ignore symptoms and issues. Other days, it overtakes my mind. It is a battle of the mind really. A battle that I give to God and remind myself it is his to work out.
We meet with a new neurologist (due to our moving and needing a closer doctor) on December 2. I really hope that we like her. She is a younger grad so I'm hoping for more up-to-date knowledge on Chiari.
As we walk through this time in our lives, I have a goal to draw more near to God. He is the only comfort that an aching heart and tired mind can get. He is the only one who gives answers and peace. He is the only reason I get up each day and work harder to do better. Who knew it was so hard to just keep your children alive? Hugs and kisses to all my fans! :) xxxx oooo
Keep us in your prayers. I am believing for something miraculous.
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