Saturday, May 10, 2008

Bye Bye Dallas?

Hey everybody, sorry that I have not kept everyone upated as well as usual. This trip seems to have taken a lot out of me. I got sick (some kind of stomach virus that Jack caught the following day) our first evening in Dallas and I still have not recovered my energy. Anyway, we are going to be heading back home this evening.
Jack's neurosurgeon and craniofacial surgeon now agree that Jack does not need a cranial reduction. As Dr. Fearon put it, he does have some extra room in his skull. How much room is too much room? Nobody really knows. Jack is at some increased risk for head injury because of this extra room. How high is the risk? Nobody really knows.
The only bad news we received is that Jack's reflux has not been under control like we thought. He apparently just got used to the pain and no longer cried out like he did before. He had erosions as high as his vocal cords. I feel terrible about it. We are resuming his Prevacid and it will cut down the acid and help heal the erosions.
Besides the endoscopy and CT scan, Jack had his left ear tube replaced and had his left eye stitched to keep the eye from popping out.
As long as Jack continues to do well, his next major surgery will be a midface surgery. Dr. Fearon says that he expects Jack to need the midface surgery a bit early on because of his obstructive sleep apnea. I was encouraged a bit because Jack's sleep apnea has improved a bit since he has grown. Dr. Fearon says that children with Apert syndrome and severe obstructive sleep apnea like Jack usually see a small amount of improvement with initial growth of the airway. Then, because the midface grows at 1/3 of the rate of the rest of the body, the obstruction gets worse again. We were really hoping to delay the midface by using the Bipap but Jack already requires really high pressure levels. Dr. Fearon said that he is expecting to do the midface surgery at about age 5.
In the meantime, Jack will continue to have ophthalmologic appointments every 6 months to monitor his optic nerves, a MRI every year, and a sleep study at least yearly.
That's all the news (I think). I'm still very drained and may have left something out. I'll post more from our trip after we get home.
Sent from my Palm Treo

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