Now onto some Serious Business

Okay, now to fill you in on the appointment with the surgeons.  Lincoln will be having a “functional” hemispherectomy, meaning that the whole right side will not be taken out.  Instead, the temporal lobe comes out and the rest is simply (ha) disconnected.  It should be about a four to six hour surgery.  Considering that the Wada was an unexpected three hours, this shouldn’t be that bad (ha).  The Wada was training for this.  His entire head does not need to be shaved, only the one side.  Of course there could be complications, but the percentages are very low (and we’re not expecting any!).  There is a 20% chance that he could need a shunt for life, but that also means that there’s an 80% that he won’t.  He will probably be in ICU for two days after the surgery and then moved to the pediatric ward.  We spoke at length about getting him rehabilitative therapy as soon as possible after surgery - ot, pt and maybe speech.  The plan is that he will get therapy throughout his hospital stay, then we’ll stay in the city for a week while he gets outpatient therapy, I will drive him to daily therapy when we get back home and finally, he’ll continue with school based therapy when he returns to school.  He’ll also be visited daily by a tutor that the school provides.  The kid will be busy.  It is likely that he will loose the use of his left hand.  This breaks my heart because he’s worked so hard to get what use  he does have.  His left hand doesn’t work perfectly now, but it works, and he’s part Italian for God’s sake! 

He needs both hands to talk!  

Watch the video of Cameron (thanks Uncle Frank).  Look at the way she carries her left arm and hand.  That is probably what Lincoln will look like.  Think also of Bob Dole holding the pen.  I haven’t shown Lincoln the Cameron video yet but he has seen another and he’s still okay with the idea of losing his left hand.  He wants the seizures to end. He will also lose his peripheral vision in his left eye, and might have a little more weakness in his left leg, but that’s something that we can really work on with therapy and being an active family.  All of our doctors have also said that often the improvement is “dramatic” when the well side of the brain is allowed to do its job without being assaulted by seizures.  Dr. Harter explained that even though they’re taking out the motor cortex that controls the left side of his body, that there are still some small pathways that are on the left side of the brain (the well side) that control the left hand, arm, leg, etc.  This is very important because it means that we can build up those neuropathways to bring back more use of his left hand and leg.  This is exactly what we did while he was a baby, one of the main reasons I quit my job: to build neuropathways.  We did it before, we can do it again.