Saturday, January 08, 2011

Coast to coast and yes as you may expect very different thoughts on how to proceed with Wes' craniofacial surgeries. A definite immediate surgery would be to revise his lip and address his collapsed nostril. Both say bone graft for his gum line at 7 or 8 years. Surgery for hypertelorism, distance of his eyes, 8 to 9 years old.

The contradiction come when considering his midface and palate revision/VPI. Both doctors feel confident that Wes will need a midface advancement. The midface advancement is very complex, involves breaking many bones in his face and placing a external halo type device, RED rigid external device, for nearly 3 months. Seattle this year, Dallas when he is 7 or 8 years old. Seattle does feel that Wes VPI or palatal length needs surgical repair. Dallas doctor does not hear a significant nasal emission or air through his nose meaning his palate is not closing enough. Also discussed is the fact that when his midface is advanced, his palate will also move forward making this VPI (causes nasally speech) more of an issue. Sure that makes little sense to most, but basically Wes already has difficulty breathing a palate revision now would make this more of an issues. A midface advancement would bring his face out more making breathing better, but also creating more noticeable nasally speech. Although a midface advancement could leave a larger space between his palate and back of his throat creating more nasally speech, it could improve other aspects of his speech. As his upper palate would come out more, which at this time causes his tongue to thrust out when he is speeking, because his lower jaw protrudes out past his upper jaw, Class III malocclusion. A midface advancement would also bring positive changes to protect Wes' eyes, as his eyelids should be able to completely close over his eyes. Right now his eyes are not protected by his orbits, because his eyes do not sit safely in his orbits. Of course the most important change would be his face coming out enough to give his airway more space. Here is a little girls story with the RED.

According to Dallas doctor there are only 3 centers who treat children with Wes' type of craniofacial situation, Dallas, Seattle, and UCLA. Nothing in Florida! Seattle is not overly concerned about the distances, but it would mean pretty much taking residence in the Ronald McDonald House for an extended amount of time, 1 to 3 months. They also feel that on the east coast the team at CHOP could handle the complexity of Wes. At this time we are awaiting notes from both teams before making any decisions.
Surgery is never a decision you want to make for your child.


Anonymous said...

Thanks for the update Gina and the photos. You all looked great, especially the guys in suits!
You explained all Wes' surgical options very well so it was interesting and understandable! Thanks! Wes(and all the fam) are continually in my prayers for joy, healing, peace, and strong faith.
Hope 2011 brings many blessings!
Love to you and the guys! El

Anonymous said...

hey gina,

have you talked to the nyu team? dr cutting is an amazing surgeon.


Anonymous said...

Thanks for the update Gina. I know it's alot to comprehend and hard decisions to be made. I have said before and will say it again..our Wes has the " BEST of PARENTS". He is such a precious child and we love you all dearly. We are here, whenever you need us. Aunt Sharron and Uncle David