Friday, April 01, 2005

Recovering from surgery

I always read about kids that are "back to their normal self" 2 or 3 days after the VNS surgery. I would say John is 80% back to normal. He still requires a pretty hefty dose of Tylenol every 5 hours or so. And, when he gets tired or cries a lot it sounds like he is losing his voice. Plus, his sleeping patterns are still screwed up - he was up crying from 2am - 4:30am on Wednesday. I think his incisions are healing fine. I don't really know what to look for, but Yoshie assures me that they are OK. We have to keep him in a turtle-neck so that he doesn't scratch the wounds.
His seizures are back to normal, which is too bad. He's having pretty strong drop seizures, and it seems like he manages to fall right on his VNS quite frequently. He doesn't complain, but it sure seems like that must hurt. We're going to try to get him to wear a life jacket for the next couple of days for protection.

We're planning on doubling his dose of Lamictal either tonight or tomorrow. So, as always, we're hopeful that we'll see some improvements in his seizure activity.

Also, since the 2.5:1 diet ratio obviously isn't working, we went down to a 2:1 ratio and increased his calories by 130. He got an amazing 50g of tofu for lunch today! We try to get most of his fats in via healthy oils, so he doesn't have to eat much whipping cream anymore. That's good, as it was getting increasingly more difficult to get him to take it.

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