In attempt to fill anyone in who is behind and who doesnt like to read my blog (I rarely keep entries short), let me fill you in. Two weeks ago J had a CT scan done of his skull. Last week we learned Little J has multiple suture syndromic craniosynostosis. It is a complex, rare condition that means nearly all of his skull sutures (growth plates) are fused. Most should not fuse until age 20-30. There is also evidence in his CT scan and last MRI of long-term intracranial pressure. This combination is life threatening, and we are acting quickly. After several choices of doctors, hospitals, and procedures, our family has elected to have a Posterior Vault Distraction surgery done here at Primary Childrens Hospital with our local neurosurgeon and craniofacial surgeon. We met with them today and they decided to move fast. Surgery is scheduled for this THURSDAY. It is a risky, 3 hour surgery that involves the skull and exposure to the brain, and 33-50% chance of blood transfusion due to blood loss. This is not a surgery they do every day, and this procedure has only been around for 2 years at our hospital. Jayson will have his skull cut open from ear to ear and distraction devices placed on each side of the cut skull. He will then be stitched up. Over the next 2-3 weeks, Mike and I will slowly adjust the distractors so they stretch Jaysons skull and scalp to make room for his brain. At a later date months down the road he will have another surgery to remove the distractors. Surgery will be very very hard on Little J, and recovery will be very very hard on all of us. There are some scary risks associated with this surgery, but there is also a lot of hope for increased development, reduced seizures, and overall better health. Thank you everyone for your thoughts and prayers. If you would like, join us in supporting Jayson and wearing purple on Thursday. This color represents epilepsy, Chiari malformation, and Craniosynostosis, the three conditions that affect his and our lives the most. Thanks for your support. We love you
Posted on: Wed, 12 Nov 2014 07:36:27 +0000
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