I feel like the worse blogger in the world. I want to apologize to all of you who have worried about Emma over the last week not knowing how she is it has been a long few weeks!
On November 22nd an amazing benefit was thrown for Emma to help with her expenses at Identity Studio Salon here in Bonney Lake. The amazing owner Stephanie opened up her spa inviting a good friend of ours, another local stylist, Heidi to join her. All proceeds from that day were donated to Emma. It was overwhelming in the way it came together. What started out as a small auction turned into a huge online silent auction and included snowboards, BMX Bikes, and a signed football and gloves from the wonderful Seattle Seahawk Richard Sherman. People I barely knew showed up to help, people I had never met before donated items. It was the most amazing thing and something I can never show my gratitude enough for. That show of support was the only thing that helped me through the hell of the next two weeks.On December 2nd Emma woke up and the first thing she said to me was "Today isn't surgery day right? Its
My sister stayed in the room next door and they were all hungry from not having dinner so they ordered Pizza. Emma wanted pizza, but I don't think it was that Emma wanted pizza as much as Emma knew she couldn't eat anything that late because of the sedation the next day. Emma at this point had mastered the fake cough, she had told everyone she was sick so she couldn't have surgery but the pizza I think pushed her over the edge. She sat in the hallway with my sister and cried, she was hungry and she wanted pizza. She didn't want surgery she just wanted pizza. I got her into her pajama's and crawled into bed taking her with me and snuggled her until she fell asleep. I of course didn't sleep all night. The idea that in just a few short hours I was going to have to hand over my 6 year old to a group of people I didn't know made me physically ill.
5 am came faster then I ever could have expected it. I got Emma up and loaded her in the car. I decided it was best if I went alone, but my 14 year old couldn't stand the idea of not going. I handle stress better when I'm not worried about how everyone else around me is handling it, but I took her too with me. I carried Emma in her jammies from the car to the check in desk, then waiting patiently for someone to come get us. I could have waited longer, they came far to fast. I carried Emma back to the room where the nurse asked about her "cough" I tried to explain it wasn't a real cough but she got a bit snotty with me and went through the whole testing her lungs thing, which just made Emma more anxious. Emma isn't a people person, she doesn't like being messed with. This hospital visit was going to push her well beyond her comfort zone. The Dr. soon followed after the nurse saw that Emma's lungs were clear and signed his initials on the back of Emma's neck (still not exactly sure why). After he left the anesthesiologists came in, there were two of them. We went over some paper work by this time I had changed Emma into her gown and she was clinging to me. It wasn't until I stepped into the hallway that led to the operating room that Emma lost it. I was carrying her with her legs around my waist and her face buried into my neck, she was sobbing. She didn't say a word she just cried. I fought back the tears but I only could do so much. We got into the operating room and they asked that I lay her on the bed. That wasn't going to happen, Emma was clinging to me like her life depended on it. The anesthesiologist decided that I needed to sit down and he would give Emma the "sleepy mask". She wouldn't take it, she has had this mask at least a dozen times since being diagnosed but this time was different and she refused to put it anywhere near her. So the doctor held her head and pressed it against my chest and held the mask to her face. So... Emma held her breath. She could only do that for so long and I watched her as her eyes rolled into the back of her head and listened to the monitor as her heart beat began to slow and her breathing got shallow. It took only a minute for her to be asleep enough for me to lay her down, so I stood up and laid her on the bed. As soon as I leaned in to kiss her the tears began, I lost it. The nurse came to me and told me she would be the one to keep me updated throughout surgery and she would walk me back to my room. My glasses were foggy by now and I still had the mask on my face as I walked through the long hallway filled with medical equipment. I asked her to stop for a minute, I needed to breathe. I stood against the wall to catch my breath for a minute and clear my eyes before continuing back to meet up with my oldest daughter and my mom who had arrived.
For the next 6 hours I was in the weirdest place in my head. The waiting room began to fill up with my family everyone was there to wait with me. I laid down on this cot and waited patiently for the pager they gave me to go off which would mean I could get an update of how she was doing. I only got 1 update, it was really the longest 6 hours. I cannot tell you the relief I felt when I saw the surgeon walk into the waiting room, he brought me a picture of Emma's brain, and told me that they removed more bone then they thought originally but that the patch was beautiful and that she did really really well. He said she was on her way to get a CT scan, and they would bring her back to the ICU where I could see her. So I stood there waiting for them to tell me I could see my baby.
When I finally got to see Emma I was so relieved, she looked good. She was still asleep which made her look angelic, she normally is so sassy that seeing her look peaceful was a treat. My kids didn't take it well, seeing her with IV's and unconscious brought them both to tears. I stayed with Emma while people rotated back two at a time to see Emma. I would say visit but she was asleep so they just came in and looked at her then left. She didn't wake up and stay awake until 2 days later, most of the time she was asleep. If she wasn't asleep she was crying. By day 4 she seemed to be doing better, but she hated the hospital, she hated the nurses, she hated the IV's, she hated it all. So I asked if we could go home. There wasn't anything being done at this point that I couldn't do at home, and she would be happier at home. So Friday night we packed up in the freezing cold and brought her home. Those first few days were rough, she was in a lot of pain, but didn't want to take the medication because it made her so sleepy. She needed it every 6 hours, luckily my youngest sister was here and slept in bed with Emma her first night home. So I could finally get some sleep.
We are now two weeks out and minus a fever and one fall down the stairs Emma is doing great. Her incision is healing nicely and we go in tomorrow to have a "wound check" then again in 3 months for a followup brain and spine MRI. Her eyes are no longer blurry and she is not blinking weird anymore. We won't know if they headaches have been relieved because her head hurts still from the surgery but I hope that we caught it in time. She is getting back to as normal as one can after having their brain cut open. She gets worn out easy and you can tell when she has over done it but I think in a few more weeks this will all just be like a really crappy dream.
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