Surgery Cancelled

As you know, Sophie was supposed to have her heart surgery done today. Well, things didn't go as planned. My apologies for not letting you all know sooner, but things have been hectic around here and all I have wanted to do it hold Sophie. When I am not holding her I am checking on her every other minute.

I came home from work on Wednesday, the one day I was able to work this week, and Dan said Sophie had been screaming the entire day and refused to sleep. Dan hadn't slept either because our sitter's son had strep and I couldn't send Sophie. Sophie was lying on the floor and she wasn't crying. Dan said she had stopped a few minutes before I came home. I sat on the floor with her and she really didn't seem to care. I noticed her Nystagmus was worse than normal (eyes rapidly moving back and forth) but Sophie also hadn't been the same since her seizure on Saturday.  All of a sudden Sophie just didn't seem responsive and the right side of her body was jerking. Leg and arm. Uncontrollably.  I told Dan something wasn't right. He tried to get her to respond and she wouldn't. Sophie was breathing but it was shallow.

Dan and I rushed her to the ER. Sophie was having a pretty bad seizure. We arrived at the hospital and I demanded they get us in immediately. They complied. Of course it had nothing to do with the fact that there wasn't anyone else around. :) Once they got Sophie to a bed they started the IV in her left arm and it blew. Luckily, there was a nurse there that we had on Saturday and he was able to get the IV on Sophie on his first try. Not heard of with her. He took it and put it in her right arm and he was SO good with her. Talking to her in such a calm, soothing voice. I felt like he truly cared about my child. I so wish I could remember his name.

Once the IV went it the immediately gave Soph adavan and I had already had a call in to her neurologist. By the time the IV went in and the meds started, it had been 25 minutes that Sophie had been seizing. It was the scariest thing I have ever experienced.

We were in the ER for a few hours, surgery was cancelled because she is not stable and Dan and I are terrified that this is going to put Sophie in the running for open heart surgery because they didn't have time to waste with her. We were sent home on Keppra, 2x a day. 4 ML for 2 weeks and then we bump it up to 8 ML for the rest of the time.

From what I hear there is a 1 in 3 chance that Sophie will become extremely irritable. As my wonderful friend, Shandra, put it...the way Murphy's Law has been working with us lately, Sophie will be the 1. I am so thankful for honest friends. I am also thankful that she knows my daughter so well and loves her so much.

Sophie finally really woke up around 11 today where she wasn't so groggy and she actually interacted and smiled. That did our hearts good.

Dan and I are terrified. Shane wasn't here, luckily, and we are just trying to put on foot in front of the other because to be completely honest, we don't know our left from our right at this point. I don't know what is next, I don't know when heart surgery is and I don't know when and if I will ever sleep again.

I can't bring myself to pray right now because I am so pissed off at God that praying isn't something I can do right now. So, I am asking you to do it for me. All I can do is scream and cuss at Him. Luckily, for me, He understands and knows I will get over it...eventually. Right now, in this very moment, I don't want to get over it. My family has been through more in the past 3 years that most people ever have to experience. It isn't fair, I don't understand. I am tired of hearing that God sure knew what He was doing when He gave Sophie to us. She is just extra special, she just needs extra love. All I want to say is SHUT THE FUCK UP. YOU THINK THAT WE ARE JUST THAT SPECIAL TO GOD THAT WE GET TO HAVE BABIES DIE ON US AND THEN HAVE ONE THAT IS MENTALLY IMPAIRED. REALLY? Last time I checked, special was a good thing. Special was a reward. I feel like I am being punished. Nothing about this is good or ok. Sorry, I am just being completely honest right now.

Once I know more I will update you. At this point, I am just waiting. Waiting for the doctor to call, waiting for my daughter to not be so sleepy, and waiting for her to have another seizure.