Taylor & Daddy @ the Circus
The surgery has been scheduled for September 14th. We have all the pre-op stuff going on next week. At least the surgeon is having the blood drawn when they do Taylor's port flush on Friday. I am not really worried about the actual surgery. Goodness knows Taylor has had a lot of surgeries. I suppose I should post a list one day.
This VNS implant has caused problems since the unit was replaced in 2007. Now, this surgery is going to take 2 different surgeons and 2 separate incisions to complete. The ENT surgeon says that their biggest hurdle is moving the unit to another place on her chest without messing up the wires. His actual words were "wreck the unit". If they do that, then he will just clip the wires attached to the vagal nerve, remove the device, and close her up.
We will then see if she seizes even more than she does now. If she does, we get to go for our 5th "VNS only" surgery and start all over again…this time, with the implant in the spot it should have been in 9 years ago. Okay, so I'm not as bitter as I seem. I realize that 9 years ago, Taylor was one of the first pediatric patients to have the device. It was also implanted by a neurosurgeon. He was only doing what he thought best.
Taylor has a very high pain tolerance. However, this surgery is one of her more painful ones. She recovered from the pain of brain surgery 10 times faster than did from the VNS surgeries. I'm sure the fact that they are cutting the same scar from the first surgery for the 3rd time doesn't help.
Yes, even after dealing with a medically fragile child for 20 years, I still have "why" tantrums. I don't think that will ever go away. I think you just learn to adapt after so long and those moments come less and less. No matter what though, there will always be those kinds of days in the future…it just comes with the territory. Otherwise, I'd be in the padded party room with other moms/dads of special needs kids.
2 comments:
Oh, wow. I'll be thinking about you! That's got to be tough--I know that Samantha's open heart surgery at 4 months was hard for us, but I can't even imagine what you and Taylor have been through. I hope everything goes well and recovery is swift!
So sorry it's taken me so long to get back to you. I don't know a lot about Banzel. The one thing I do know is that it's approved for use in kiddos with Lennox Gastaut. Reagan has had some of the most difficult to control Infantile Spasms (they've never been controlled or even significantly decreased with the 14 medicines she's tried). We are running out of things to try, so Banzel seems like a good option. We haven't started it yet, so I'll be sure to let you know how it goes. Reagan's little friend Mira is on it now and it has helped her seizures (her is link at the bottom of our blog). Anyway, take care and I will certainly keep you and Taylor in my prayers! (by the way, Reagan was almost Reagan Taylor!)
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