We spent some time trying to chase Max’s bigger seizures and they didn’t show up. I think I’ve mentioned about 5 billion times how strange it is to spend all of our time trying to keep seizures at bay then come into the hospital and basically chum the waters to lure in the same sharks we’ve been frantically swimming away from. Even having lowered and cut Max’s AEDs (Anti Epilepsy Drugs) no seizures. Things have remained relatively quiet since the RNS was turned off. The team decided to take his leads out. That surgery happened Tuesday night.
It was a pretty brutal day. We definitely focus on the positive but we also are very cautious about “false positivity” with Max. We don’t subscribe to the “everything happens for a reason” line of thinking or the “God only chooses the strongest of people to bear these crosses” line of thinking. We don’t feel like it’s fair to push that on him where he feels like he HAS to be happy all the time or some kind of martyr. That being said, Max naturally is one of the happiest people I have ever met. We do tell him that sometimes things just stink and it’s ok to be upset, sad, mad, frustrated, sad etc. That is why he has so many people who love him and take care of him. So when he needs to be sad or angry, or he’s too tired, he can be. It’s our turn to keep going for him until he’s ready to get up and keep going. Tuesday tested all of our limits.
I think it’s because we’ve been away from home since August 16th. We’ve been away from our Frankie girl since the 22nd. It is the longest we have been apart from one another and that has been a struggle for all of us.
Max woke up in a great mood Tuesday and we ordered breakfast. Then the nurse poked her head in and said the doctor had just called and said he had to be on only clear liquids because we were hoping to get into the OR at some point to get his SEEG leads removed. Max was grumpy because he was hungry and now we were looking ahead at a day of being in a holding pattern of waiting for a slot. It didn’t open until 6:30 so it was a long day for everyone. At this point he had been essentially tethered to his bed for 15 days and had 2 brain surgeries in that time. Max went back for surgery and Matt and I waited in the waiting area.
Dr. Curry came out about 2 hours later and told us everything went well and he was being cleaned up. They’d call us back to recovery once they were ready. Matt ran to grab some things and I waited to be called back. About 20 minutes later one of the assistants came out and asked if I was with Max and could I please come down. I went with and Max was having a really hard time coming off the anesthesia. He’s never had a bad reaction before but there we were. He was very sad, mad, cold and his head hurt. His throat hurt from the breathing tube and now from yelling. They needed to do a CT and wanted him to lay flat on his back and head where he had just had 36 leads removed from. He was so sad because his head hurt which was making him cry and hyperventilate. He was trying so hard to do what they asked and lay flat but could not stand the pain of putting any pressure on his head. He was crying that he wanted to go back to his room or home and wanted tylenol. He was crying. I was tearing up. He tried to lay down and could only do it on his side. I told them they needed to call neuro. That they could take images of him on his side or should have done it when he was sedated but that he was done and we couldn’t do anymore. He has been through more than anybody else I know and I’ve never seen him react to anesthesia like that before. They took the images of him on his side and he was able to get back up to his room around 9:30. We got him tylenol and he was able to eat some yogurt and sleep.
The other things that transpired: We found out our next steps. They have zeroed in one the area they think at least half of Max’s seizures are coming from. They want to perform a resection. However, it’s a very tricky area to perform surgery on and more detailed mapping needs to be done. Max needs to have grids placed. Grids are similar to the electrodes from the SEEG but cover a specific area and let them cast a wider net – in this case, Max’s area where language might be in order to rule out possible deficits as best as possible and map just that area. Then the grids will be taken out and Max will have a resection. They will hopefully be able to remove tissue from his brain that is causing seizures but will not cause him to lose important areas that pertain to function. Mapping with the grids along with all the other information gathered from SEEG and VEEG and other imaging will have given them the most comprehensive picture to get at this with the best precision.
Initially (for maybe six hours after hearing the plan) it seemed we were going to be able to come home for about a month then return for grids and resection. Then they looked at scheduling and insurance and realized we need to stay in order to lock things in place. Now Grids are scheduled for Monday, September 12th. We went through every single emotion in a matter of minutes. The neurologist and I reassured Max that if he couldn’t go home yet, we’d make things as fun as possible here. Matt and I determined we would bring home to us because we cannot possibly go any longer without seeing our Frankie. I had a five minute ugly cry in the bathroom to my mom and then Matt and I booked flights and a hotel for her and Frankie. Matt is picking them up at the airport right now!
It’s a wild ride.. But we’re still on it
