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May 19-25

This Week

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So we’re heading home! 

Jake is ok. He is groggy and in some pain but anxious to be home. 

We saw Dr. Hilliard who said everything went well. The only little hiccup had to do with one of the incisions from the surgery two weeks ago. When he removed the staples from those wounds once Jake was under anesthesia, one incision had not healed completely. There was no signs of infection thankfully, but he wasn’t pleased with how it looked. He took the opportunity to clean it up and add fresh sutures to aid with healing. He will see Jake in two weeks to check it, and we’ll watch it in the meantime. 

We spoke at length with Luke, the DBS representative who told us all about Jake’s new hardware. He got it up and running and it’s working perfectly. Like the RNS that Jake already has, the DBS will record brain activity while giving an electronic stimulation. It’s different from the DBS though since it is in a different part of Jake’s brain and will give a constant stimulation rather than only when it senses a seizure. 

The DBS is also different from the RNS in that Jake can control it himself! It came with a phone and a “communicator” that looks like a computer mouse. Jake can use this to mark seizures, and he will also use it to activate the electrical stimulation from the DBS into his brain. For now the device is just in recording mode, but in two weeks time he will set it to stimulation, starting at a low level and increasing as his doctors instruct him. 

We’ll be back at Shands in two weeks to check his wounds and remove the staples, then later in January to see Dr. Kalamangalam, Jake’s neurologist. 

Please pray for:
  • Jake’s incisions to heal properly, especially the one from the last surgery that did not heal well. Pray for complete healing and no infections.
  • Jake’s recovery over the next few days. It’s Christmas after all, and he wants to enjoy the holiday.
  • The DBS device to work in ending Jake’s seizures once and for all. 

Today we are thankful for: 
  • Dr. Hilliard, Luke, Tricia, and all the hands that took care of our son today.
  • An amazing Level 4 Epilepsy Center just two hours from home. We’re so thankful for UFHealth/Shands hospital! 
  • Technology and medicine. 
  • Jake. He amazes us with his strength and resilience. 

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