Seizure Diaries: World Record Probes

Hello, All,

The surgery took much longer than the doctors’ expected, but in the end it all went very well. Visually it was disturbing, because Charlie had so many probes placed in his head and face. He still has them in right now. The nurses shaved his head and the doctors drilled the holes. At last count he had 17 (that is seventeen wires) in his brain. The doctor said that was a record. We will call it Charlie’s world record! Someone call Guinness.

But even before the probes were inserted, the doctors ran into some technical issues with the equipment. The entire network of wires hooks up to a monitoring device that reads the probes. After Charlie got to his room, the technicians realized that the wiring on the monitor was not able to read his seizure activity. They contacted the manufacturer and had to trouble-shoot the issue. They got it sorted out, but, as a result, it took an extra three hours to get the equipment up and running.

Image result for shaved head probes implanted in brain

Reading the data..

Luckily for Charlie, he slept through all of it. He was on a Morphine drip for the pain and was OUT for everything. He has one probe in his jaw, which he said bothered him the most when he regained consciousness. He could not comfortably chew with that probe in place. So he was on pretty much of a liquid diet.

Mary, he did wake up for about two minutes, when I was there, and he saw the bouquet of flowers you sent. Thank you very much. He loves them. I am sure tomorrow he will be a little more awake and possibly be able to text with his brothers and sisters. If not, I am in contact with his doctor and will keep everyone updated.

I am working the next six days from 12:30 pm to 9:00 pm. I am pretty much exhausted these days, so I am going to go to bed tonight around 10:30 pm. Nonetheless, feel free to call if you have any questions or concerns. I feel we will finally get Charlie some quality of life after they determine the best step to go from here.

Please pray for answers for Charlie.  Also, a huge shout out to Joey for coming over last night and staying today to help out with our dog, Jaxon. Thank you so much, Joey Caplan. I have arrangements made for Jaxon for the rest of the week while I am at work. Jaxon was already looking for “Daddy” when I got home. He is so used to hanging out with Charlie all day and sleeping on the couch with him. I know I started missing Charlie as soon as I walked out of his hospital room.

Much love to all of you,