Surgery update

I know I haven't been updating like I want to but it is so hard emotionally to write these posts. I want to be writing posts about Amelia running around the park or going down water slides. But instead I have to write about brain surgery. Maybe one day in the next few years I will be able to write about her finally being able to walk. Maybe then I won't cry when I see pictures of kids her age walking around, playing at the park, walking on the beach. Maybe one day our lives won't revolve around therapy and doctors, but things Amelia will enjoy. 

Surgery itself was a success. When the left side of her head was opened up her surgeons were able to shift her brain over so that the bulge she had is gone. This meant her plastic surgeon had modify the plate that we waited 5 months for. Ugh! When talking to us after surgery her PS said, like a proud grandpa, that Amelia looks cute as a button! How sweet that Amelia has everyone wrapped. 

Everything was going well, until the fever started. It kept getting higher instead of lower with Tylenol. Her blood work came back fine, so they weren't too concerned with a fever but with all the blood on her head they were worried that if it didn't drain quick enough then that would cause an infection. There is also concern that the fever is coming from the body rejecting the plate. They did a blood and urine culture yesterday, so far they are both negative. They want to culture again if her fever reaches a certain point. I'm praying they don't have to. 

On top of everything Amelia hasn't had a normal bowel movement. This poor girls belly hurts so bad and she can't push a fart or poop out because it hurts her head. She just can't seem to catch a break at all. 

We have an army praying for her and the prayers have been helping Matt and I keep our calm. We know that Amelia is in God's hands. That being said, it's the hardest thing in the world to watch your child laying in a hospital bed in pain. We still can't even hold her. She doesn't understand why we won't hold her and comfort her, she's just upset with us. I can't help but look at her right now, trying to sleep in this makeshift car seat thing, completely uncomfortable, head wrapped up, IVs in 3 spots, drain coming out of her head, and cry. She's just a little girl. She shouldn't be having her 7th brain surgery (and this isn't her last by any means). I know people mean well when they say she's a fighter and God has big plans for her because of what she's been through, but hearing that makes me want to scream. Until you are sitting in a room, listening to your child scream and cry because she's being taken from you and going to have her head cut open for the 7th time you will never understand. Until you sit here, for the second time in your child's life, watching them helplessly, not being able to hold or comfort her, you will never understand. The hurt and pain that I feel is so great that I can't even function at times. There are days I do nothing but cry because I hate seeing how bad she struggles with little things that should come natural. My heart breaks for this little sweet girl.