Remember the picture of Danica's CT from April in the post Blessings and Curses? I will never forget sitting in shock as we looked at the image on the big screen in Dr. Crone's office. We knew there was something horribly wrong with Danica's brain, but we never imagined her bones could be that crooked. This is a new picture of Danica following her fusion. The titanium wire loops through her tiny bones and the itty bitty screws hold it in place. A bone graft is one of the most important parts of the surgery. The Minerva brace holds her perfectly straight and still while God does the work of healing.
God has been so good to answer the thousands of prayers for our girl in the last weeks. Just 14 days ago we were leaving for her surgery. Today we are "home". Although we had some very hard post-op days, our girl is smiling and adjusting to the metal "cage" she must wear for 12-16 weeks. We are so thankful she is not in a halo or Minerva cast. (Believe it or not this brace is the lesser of all three evils.) Danica has not run a fever or showed any signs of infection since her surgery. We finally have found a regimine of medicines that seems to keep her as comfortable as possible without any side effects. Danica is dealing as well as can be expected with her limitations.
Remember our hesitation with Dr. Crawford in the post Fake Erased? It seems during that time he was making his own huge life decision whether to delay retirement and continue his thirty years of working in orthopedic surgery. The nights I spent on my knees praying for God to make this path straight and direct our steps were not in vain. This man was specifically given the courage and knowledge to tackle Danica's case. Every surgery he had ever performed led him to October 5th and our sweet Danica's bones. The 3D model he built of Danica's skull and cranial cervical spine was the first like it he had ever constructed to help in preparation for this delicate surgery. The state of the art operating room and video assisted technology available at Cincinnati Children's were so necessary in such a difficult and multi-disciplinary operation like Danica's. The support staff including the pain team and nurses, particularly in the PICU, were amazing at walking through each minute with us after Danica's surgery. So many things about Danica's reaction to mediciations and her case were truly a first for these experienced medical professionals. God gave much grace to Dan and I as we patiently worked through the issues and to them as they explored unknown territories.
I cannot thank everyone personally who was part of our journey, but I have to mention Dr. Crone again. If it wasn't for his insight into the post-op report from Danica's first Chiari brain decompression last November and his ordering the 3D CT we never would have found this atlas assimilation. His patience with us as we sought other opinions from around the United States, and his persistence with Dr. Crawford that Danica's neurological symptoms required surgical intervention now became one of the greatest reasons I did not stop fighting for my girl. With all the risk surrounding the brain surgery portion of Danica's surgery we felt completely at peace concerning the plan and the desired outcome. Dr. Crone's clear communication and the bedside manner of both him and his team were unparalleled.
I had nightmares last night. We were still in the hospital. Danica was incoherent and thrashing. I was out of my mind with grief and fatigue. This happens every night since her surgery. It will take some time for healing physically, psychologically, emotionally and spiritually. Our God is knitting together Danica's bones and working the miracle we have been asking for while he touches our minds and hearts and spirits.
A facebook status I have posted over and over the last months is a quote from Shauna Niequist's Bittersweet, "I believe still today what I have always believed: that God is good, that the world he made is extraordinary, and that his comfort is like nothing else on earth." Thank you for praising our good God with us and continuing to pray for healing and comfort as we endure on this journey.
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