Drew had an occipital cervical fusion on March 9th. And yes, it is as painful as it sounds! He is currently in the neuro-trauma unit at Primary Children's. He has been quite painful but such a trooper! He has had a few issues with bleeding and keeping his oxygen sats up. He has also been nauseated and not eating much. This all started almost 3 years ago when he had x-rays to get ready for his bone graft. His orthodontist (of all specialists) noticed on the x-ray that Drew's neck curvature was not right and encouraged us to have it checked out. We had an appointment the next day with genetics and it kind of went from there. It took us over 2 years to get all the referrals, etc worked out, but we finally saw a neurosurgeon on Feb 19th. He said Drew's 1st vertebrae was 2 pieces instead of a ring and that didn't allow proper connection between his head and the 1st and 2nd vertebrae. He recommended the fusion but said it was up to us. After the surgery, he told us is was a good thing that we went ahead with the surgery because Drew's head was very loose. So, that was reassuring to know that we hadn't decided to put Drew through all this "for nothing".
We have had some really good doctors and nurses working with us so far and that has made it all a little easier. Dr. Brockmeyer warned us that the first three or so days after would be really rough and they have been hard. But Drew is, for the most part, very easy to work with on this type of thing. It's funny, he can sit unflinching and not complain about a blood draw, but you get and oxygen mask within 3 feet of the kid and he goes ballistic! LOL.
