Tuesday, October 23, 2012

Dallas Deliberations

Traveling for medical care adds a layer of complication and stress that nobody needs. When you travel for medical care, everything has to be coordinated just right. You can't just come back another day if somebody doesn't get all the orders right and have the tests arranged correctly. It has a been a long stressful day full of confusion but we seem to have gotten everything worked out.

Jack's MRI showed that his ventricles had not changed much. And that's good. Jack's head circumference is unchanged. And that's good. But Jack's head height has increased. That's not so good but no one can really explain the height since the ventricles look okay. Jack has been developing by leaps and bounds. Of course, that's good. So why are we here?

Now you're caught up to where we were (minus the high stress level from last minute changes) at about 4 pm today. Then we met with Dr. Fearon and talked and talked and talked and talked some more.

The only "known" is that Jack needs to have an anterior cranial vault remodeling to make more space around his frontal lobe. Jack's brow bone is fairly recessed and it will at some point compromise blood flow to his brain. It could be compromising his blood flow right now. Jack's developing well but maybe he could be doing better. The bottom line is no one can guarantee the perfect timing for Jack's anterior cranial vault.

We ultimately decided to continue to trust Dr. Fearon's experience and Jack will have surgery later today. The surgery will start around noon with ENT first cleaning out the left ear and replacing the tube. Then the gastroenterologist will do an endoscopy. Finally, Dr. Fearon and Dr. Swift will spend about 5 hours cutting open Jack's skull and moving the brow bone forward.
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