Surgery update on Blaze...

Before his VNS surgery... July 16. 2024

Back on July 16, Blaze got his epilepsy device implant (VNS). He did great during and after the surgery. Once his incisions healed up (one in his chest and one in his neck), we went back to CHOA to have the device turned on. Now we are going back to CHOA every 2 weeks to go up on the device settings. They have to go very slow because it can be pretty uncomfortable if they go to fast. We've had 2 adjustments so far. Blaze did not do well when they first turned it on but thankfully he has done better with this last adjustment. However, we are still at a very low setting so its not working well enough yet to stop/control seizures. 

Healing up nicely...

You can barely even see the incision in his neck now. The one in his chest runs under his arm so it took a little longer to heal. 

Two weeks ago, Blaze had a  day full of seizures. I used the magnet to swipe his device (to set it off) but it didn't stop his seizures. I think I swiped him about 6 -8 times over about a 30 minute period before administering rescue meds. He ended up needing to be taken by ambulance to our local hospital and then transferred to CHOA to be admitted. It was scary and I was sad that the device made no difference but the doctor assured me its only because the settings are so low. 

The thing I like about this device is it also keeps up with how many seizures he has between doctor visits. We went back last week to have it read. In a two week period, he had 95 seizures. I could not believe it. I think the VNS team and his doctor were just as surprised as I was. I was hesitant about getting the device but with numbers like I'm glad that we did. With time, those numbers should come down they say. Its just crazy because I only saw a few seizures other than the day that he was having them so bad so I believe that most of them must have been during the night which is so scary. 

Blaze has a condition called Lennox-Gastaut Syndrome.  Please keep him in your prayers.