So, Harlie has a CT scan tomorrow of her head and neck. I never got a chance to blog about an appointment we had with a craniofacial plastic surgeon here in Richmond back in June.
After a lot of consideration, I've decided to get this CT scan here in town in preparation of her next jaw reconstruction. I have no idea when or where that will be. But at this point, I feel that I owe it to Harlie to do some more looking around to make sure that we are making the best decision possible when we go into surgery again. After two reconstructions with the same surgeon, and being no closer to decannulation (getting the trach out) I need to look. We might end up sticking with her surgeon - but - I need to feel really good about this decision. I don't know how many more I can put her through.
I've gotten some names from her ENT in DC. They are docs that do the rarest of the rare cases. They are in California and Florida. However, when looking around - I also have to consider her cardiac status - and the surgeon's hospital's ability to care for complex congenital heart defects. Not an easy task, trust me.
So, we'll see what happens. She hasn't had a CT scan of her head and neck since 2008 - before her two jaw reconstructions. I'm sure her jaw is a mangled mess, full of screws and pieces of bone. Ugh.
Anyway, that's tomorrow. I have so much more to write, but no time now. I'll fill you in after the CT scan.
Thanks!
Christy
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4 comments:
Christy, Take a look at Children's Hospital Boston (CHB). I just looked at their website and the amazing craniofacial surgeon who was there when I worked there is no longer practicing there (he has probably retired). But CHB is amazing all-around and you can't beat their cardiac department.
We are at CHB. They are tops for cardiac care. M had a fibula free flap with Padwa/Upton/Labow. Feel free to get in touch if you want to know more. It's a complicated story.
Kristen,
You mean you can't beat CHB's cardiac department AFTER CNMC's, right? haha
In your search I can put in a good word for Cincinnati Children's Hospital. We travel there from NW Pa.
But they have an EXCELLENT cardiology department. Not to mention they deal with most of the VACTERL cases in the world ( along with Boston) They have an awesome multidisciplinary approach not to mention the only pediatric Colorectal center in the world ( this is why they see a huge volume of VACTERL kids). We have seen Colorectal, Urology, Orthodpedics, Immunology, and GI there and they have been nothing but stellar. They know that these kids have 'quirks' and they know what to expect.
Here is the link to their Craniofacial Department: http://www.cincinnatichildrens.org/svc/alpha/c/craniofacial/default.htm
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