Monday, October 14, 2013

October 10, 2013

No one ever said life was easy.

But life WAS returning to normal it seemed. For 6 days after coming home from the hospital, Anna was her normal self. Happy happy happy. So happy.

Then on Friday/Saturday, she just started looking "off" to me. Especially her eyes. Since downward deviating eyes can be a symptom of increased intercranial pressure, I decided to follow my gut and take her to the ER. I fully expected them to tell me she was fine, and we'd be there overnight and then get to go home.

That was 6 days ago, and we are still in the hospital.

Upon checking the results of an MRI on Sunday, they determined that although the fluid outside her brain is now normal, there is now fluid inside her brain. So they sent her to surgery on Monday to place a second shunt on the back of her head.

Since then, she has oscillated between being happy and looking like her old self to screaming and crying and being inconsolable. The worst part? They don't know what's wrong with her. They don't have answers. The neurosurgeons say this is the kind of case they may only see once in their entire careers. They want to write her up for a medical journal, except that they don't know what's wrong. How terrifying is that???

Yesterday they did a complete blood count and noted that her red blood cells were low. This made sense because she was vomiting and looked pale, so right now she is in the process of getting a blood transfusion. They are running a bunch of blood tests for all sorts of rare disorders, and she'll be getting another CT scan soon to make sure there's no bleeding on her brain.

The only positive is that the second shunt surgery was successful (say that five times fast), so at least that's doing what it's supposed to be doing. Small, very small victories.

I don't think I even need to say that I'm worried. And stressed. And sleep deprived. And feeling every emotion that exists. I'm having a hard time talking to anyone, because I have lost all capacity to be normal. I just feel like I can't move forward until she moves forward. So if I've been ignoring your calls or texts, please don't take it personally. I don't think I can handle one more thing right now. I am trying to stay strong for her, but I am very nearly reaching the end of my proverbial rope, and I need every last ounce of energy to be here for my baby girl.

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