So, the day had been shaping up to be a good one. The doctors had found a happy place for Wyatt's sedation and he was more awake today than he had been in a long time. He looked and moved his little arms more today. His fluoro study was suppose to happen at 10, but due to an emergency, they had to use that time for someone else. So he went down at 2. The nurse practioner had said that she didn't see movement of the diaphragmm but I wasn't going to hang my hat on that.
So, the doctor just left from talking to me, and I am having a hard time. Dr. Lovvorn, whom I love, said that they weren't going to do the surgery tomorrow. He said that he wanted to look at the study with the radiologist and see what he thought. He also said that they weren't sure if the plication would even help Wyatt. He said that in the plication, they would tact the diaphragm down, allowing his lung to dispose of the gasses. However, because Wyatt has no left pectoral muscle, they are unsure if that would even work. He said that this surgery has been very successful in the past, but because they have never done these types of things on a child with Wyatt's unique makeup, they just don't know. Because Wyatt is missing his left pectoral muscle that would help move his lung, he didn't know if this surgery would even help.
So, as of this moment, I feel totally and completely hopeless. I feel like my child is being punished for something I did. I know that is not the case, but I do. I feel like I have been so strong and so hopeful that this set back has just done me in. I just want my baby back. I just want him to be ok. I want to hold him and rock him to sleep. I can't even put my arms around him. I want to dry his tears, not mine. I want to watch him grow like a normal child, not lay in a hospital bed with a machine breathing for him. I need him. I need him like I have never needed anyone in my entire life. I feel like the decision to have the aortapexy surgery was the wrong decision. And you can't take back that kind of decision. How do you deal with this pain? How do you cope with feeling responsible that your child is like this. I pray so hard that God will heal this nerve. I pray so hard that he be better. I know that things are doing in God's time, not ours. But how do you cope with this pain in the meantime? I hurt. My heart physically hurts. I am his mommy and I want to kiss it and make it better and I can't.
Please don't think that I am ungreatful for what God has done thus far, because I am. And I know that He can work miracles. But, I feel so broken. I feel completely hopeless. I don't think I can stay positive anymore. I just want him better. I don't know how many times I can say it. Wyatt is my life. I just want him to be ok. I want him to come home and grow up and play in the dirt. I want to worry about normal mommy things, not this. I clean dirty faces and carpets. I want to teach him and read to him. I just want to hold him.
Please know that I am venting and getting out my frustrations. I feel hopeless and I am starting to feel angry. Angry that my son is having to deal with this. I keep talking to God, asking him how he dealt with his only son's death. I ask him how he got through the pain. My heart hurts.