Thursday, October 20, 2011

What a Difference a Week Makes

This time last week, Marissa was still sedated from her spinal cord surgery. Today, she is walking around, crawling at times, but overall doing well. The doctors had told us that she would still have to be laying still and would not be able to move like she did pre-surgery. This is nothing short of a miracle. I thank God every day she stands on her own two feet.

Marissa's hospital stay was eventful to say the least. The first night we were able to room with a friend of mine from work whose son was also in the hospital. Marissa slept most of this night, waking occasionally, but refusing to eat or drink. This meant that the pain meds that Dr. Jane Jr. had ordered for her, she was not taking. Just a wonderful Tylenol suppository. On Friday night, Marissa was in a lot of pain. The Valium made her a little loopy and she would giggle and then have major back spasms. She was running a fever. They finally had to give her some pain meds through her IV that knocked her out and reduced her fever. Nothing like having a hand slap you acrossed the face at 1am, trying to talk to you. Saturday is when Marissa's autism decided to play a role in her hospital stay. Marissa was lets say wired. With some sweet tea, chocolate milk, allbuteral treatments, and Valium- she was up and ready to go. Not to mention the 9 month old baby we bunked with that just had cleft-palate surgery, who cried non-stop. Marissa went well crazy. Finally, they gave her Adavane at 11:30pm, which never came into effect until 1:15am. In the meantime, she is asking me the same questions, over and over and over again. On Sunday, I begged the doctors to send us home. Dr. Jane Jr gave his blessing and Steve and I were packed and ready to go in five minutes. Sooooooo happy to be home.

Tomorrow, Marissa gets her stitches out so back up to UVA we go. Grateful that she is defying the odds and is healing so quickly. Dr. Jane Jr. called her "courageous, amazing and remarkable". I would agree with him, not because she is my daughter, but knowing that most children and adults would not respond as well as she did to this serious surgery. She makes it hard to complain about anything, but she is simply one of the strongest people I know. While we are facing our challenges now, her level of frustration is high, and hoping that the surgery will improve her kidneys and her gait, I know that God is truly watching out for her. He proves it time and time again.

Monday, October 10, 2011

Pre-Surgery Day.... Completed

I am not sure really what I expected today, but I didn't think we would be at UVA for four hours. First it was the Acute Nurse Practitioner. She was great. She gave us a lot of helpful information and walked us though what surgery day was going to look like. She took a spinal cord model and showed us exactly where the incisions would be and the process it would take to get to the fatty fillium. I will say that Steve was understanding this explanation, as soon as she said they were going to have to chisel a bone, I was done. Then the Neurosurgeon came in next. Not so positive that this is surgery is going to fix the problems we intend for it to fix. He was a "downer" of our day. Then we went to get her blood drawn. Marissa has very skinny arms, so the first prick in her arm didn't take the second one in her hand did. The nurses spoke Spanish to her and she loved every second of it. She cried a little but not nearly as bad as I thought it was going to be. Then we went and waited...waited...and waited some more for the Anesthesiologist. We first met with a resident, who had the personality of a door, and then we met with the doctor who looked like he had stuck his finger in socket when his hair was wet. But, in the end, all was approved and Marissa is set for surgery on Thursday.

Every time we are at UVA, I learn a little more about Marissa. She is not scared of much and I am overwhelmed by her courage. She knows that mommy and daddy are there and that is all she needs. I looked at her today while we were waiting and said to myself "how did I get so lucky". Even with all this chaos and anxiety, Marissa is amazing to me. She won the hearts of the doctors today and some of the patients.

Thursday, October 6, 2011

Let the Preparation Begin.....

As my preparations are winding down for work as I get ready to go out on leave, my home preparation is just beginning. Yesterday, I realized that I was starting to feel the anxiety and stress of Marissa's spinal cord surgery. The reality is finally hear and I can no longer say "its two months away or one month away", it is now just one week away.

Marissa has been through a lot of medical procedures but never one as serious as this one. She loves the doctors and nurses and I hope that this doesn't change it. I pray that God will be with the doctors as they begin to maneuver the nerves in her spinal cord and that the outcome we all hope this will bring will actually be achievable.

As for my home preparations they are just beginning. I am preparing my heart and my mind. Allowing myself to be weak and allowing others to see me weak. Which those of you who know me well, know this is not in my personality at all. I will cry when I need to cry, let my guard down and let others help me, but most importantly I will trust God with all my heart and mind. I know He is in control and it is up to Him what the outcome will be, because He already knows it.