Nuts and Bolts

You would think maybe it would get easier after awhile, but it never does. The preparation for another trip to the hospital mentally and physically doesn't become routine no matter how many times you've gone. The packing and saying goodbye to Delaney, the sleepless night before, the very early morning, the drive, the endless waiting in many different rooms. . . It is always stomach churning. After we had left Danica in anesthesia on Tuesday Dan and I sat in the radiology waiting room. We were both thinking the same thing. Every time we have a little secret piece of hope the news will be miraculous. We silently pray Danica will be better, not worse, and this will all just go away.

After a full day at Cincinnati Children's Hospital we signed the surgery consent forms. MiMi, Dr. Crone's PA, went over a folder of pre-surgery information and gave us soap to wash Danica the night before surgery and the morning of. I think this made it the most real. We are doing this. We will have a date sometime next week. For many reasons it will probably be at least a month out, and we have asked if it could possibly be set for early October. The details of the procedures are very hard for me to write, but I hope by putting them here it will help you understand the rarity of Danica's condition even in the Chiari world and the outcome we hope and pray for. In time I may be able to write about the risks but tonight they are still raw.

Danica will first have decompression surgery. The scan on Tuesday showed her left cerebellar tonsil herniation is increasing and the Chiari malformation is now down to the level of the C3 vertebrae. It also showed a right sided Chiari which she did not have before. The brain tissue on the left side showed sign of necrosis. This means it has been under so much pressure for so long it is literally dying. Dr. Crone will make a large incision in the back of her neck and head, directly over the incision from her prior surgery, but it may be larger because of the need for fusion. He will cauterize the slumping and herniated brain tissue. He will then sew in a stent to help prevent her brain from "falling" back into her spinal cord following surgery. He will cut open the dura (the thick, outer layer of the covering of the brain and spinal cord) to try and maximize CSF flow to Danica's brain. He will apply a dural patch to allow for this extra room and put in a drain that will stay for the first 5 days or so following surgery. He will not plan to remove any more bone. It is critical Dr. Crawford have as much bone as possible available to him in the next stage of the surgery and any more bone removal would add to Danica's instability.

After all this Dr. Crawford will step in to perform the craniocervical fusion. During our visit Dr. Crawford and Dr. Crone explained the complexity of Danica's case and her age make this fusion difficult. There is no instrumentation small enough for Danica's very abnormal bone structure. These rods and pins and screws will be special made for her. The most critical part of the fusion will be the bone graft. This will help rebuild her stability. The casting decision will be made until after the fusion is performed. For both Dan and I this is the part we are most afraid of. We will not know until Danica comes out of surgery if Dr. Crawford decides he needs a halo cast or a Minerva cast. The photos are above. The halo cast requires actual screws into Danica's skull. We are praying the fusion will be deemed successful enough they will choose a Minerva. We can not even wrap our head around our sweet girl living in either of these, but this seems the least brutal. Danica must be immobilized for approximately 12 weeks following surgery to make this fusion a success and give her the best chance.

These are the nuts and bolts of what will happen. Over the next weeks I will write more about what the hospital experience will be like, our planned support system and timing. Thank you for lifting us up. We truly do have a peace over us that can only be explained by your fervant and effectual prayers. Our hope remains.