One Cool Cumber

Today we met with Dr.M, and I have to say, I like the man. He was friendly, patient, and calm...'one cool cumber' as some would say. We did have most of our questions answered, and we're comfortable with the recommendations he made. With that being said, here are some details we know now....

Dr. M would like to see the surgery done sooner rather than later. The possible available dates right now would be August 26, August 27, or September 3rd. We should know by this Friday what the official schedule will be.

James is too old (at 8 months!) to do any of the less invasive procedures. Dr. M will do a cranial vault remodeling, which in English means completely taking the skull apart and reshaping it. The doc says he can do it in 2-4 hours. James will definitely need a blood transfusion during or after the procedure (scary!), but Daddy should be able to be his dedicated donor. Most of the remodeling will be done on the top and back of Jim's skull, but the doc will also work on the bones of his forehead to release some of the shaping that has happened from the metopic suture closing. Thankfully, he should only need one surgery to correct his head shape and release any pressure from his growing brain.

However, the surgery will probably not correct his congestion, so we are also scheduled August 17th to see an ENT. We are hoping that the "million dollar" 3D CT scan of Jim's head will be enough detail for them to see the problem areas in his nasal passages that Dr. M saw on the CT, and mentioned to us today. We are also hoping that our little angel won't have to go through more than one surgery in the first year of his life!

We are grateful that James will be ok, but it is difficult not to harbor anger toward Jim's first physicians for their irresponsible actions in ignoring what should have been an obvious problem, even after we pointed out what we now know to be three classic signs of craniosynostosis. We confirmed today that had we brought him in at 2 or 3 months old, Jim may have had endoscopic or strip surgery, which are less invasive, have far less blood loss, and require shorter hospital stays.

Overall, our experience today was a postive one. Each person we interacted with was wonderfully helpful, and our sweet baby did great, even through what should have been his nap time, and even as he had his blood drawn.

PS: For anyone who has tried to post a comment, but couldn't without a google email or special account, I've changed the settings and you should easily be able to post a comment as 'Anonymous'(in the drop down menu). We just ask that you sign your post with at least your first name, because it's wonderful to know who is praying for and thinking of us.