Travis got out on Friday night. Unbelievable he had minimal seizure activity although on Thursday evening had one of his major seizures - looks like a drop seizure on the video and eeg. Unfortunately they appear bifocal which you probably know means that there is no possibility of a resection [this is the surgery where they remove a portion of the brain]. We talked a little about the corpus callasotomy, but we aren't there yet. Travis is definitely in the throws of puberty which they acknowledge is making the frequency worse. He has grown too he's just about 5 foot and weights about 109 lbs.
The plus of being in the hospital is you have more Docs checking him out and brainstorming. The Doc in charge of the floor last week, likes to tweak VNS pacemakers. He got a little creative with the cycle times, pulse width and amp strength. Based on those new settings, when Travis had his big seizure the swiping of the magnet stopped the seizure within seconds which is a far cry from the minute or two (which you know feels like an eternity) we were used to.
So I have to set up an appointment with his pediatric neurologist - who was kept informed but wasn't able to see Travis at the hospital he was in because he was in charge of the monitoring floor at one of the new hospitals that just opened up.
I'm feeling a little better about Travis' seizures, they adjusted med doses to his new weight so between that and the VNS settings perhaps we can get him seizure free for a little while.
I feel bad because people who don't understand this process seem disappointed that there was no clear cut solution and as you know there is no easy way to explain it except that its just so complex when you are dealing with the brain.
Thanks for all your encouragement and the request for prayer from all of those who know you.
The plus of being in the hospital is you have more Docs checking him out and brainstorming. The Doc in charge of the floor last week, likes to tweak VNS pacemakers. He got a little creative with the cycle times, pulse width and amp strength. Based on those new settings, when Travis had his big seizure the swiping of the magnet stopped the seizure within seconds which is a far cry from the minute or two (which you know feels like an eternity) we were used to.
So I have to set up an appointment with his pediatric neurologist - who was kept informed but wasn't able to see Travis at the hospital he was in because he was in charge of the monitoring floor at one of the new hospitals that just opened up.
I'm feeling a little better about Travis' seizures, they adjusted med doses to his new weight so between that and the VNS settings perhaps we can get him seizure free for a little while.
I feel bad because people who don't understand this process seem disappointed that there was no clear cut solution and as you know there is no easy way to explain it except that its just so complex when you are dealing with the brain.
Thanks for all your encouragement and the request for prayer from all of those who know you.
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