Tonight is the night, we’ll fight ’til it’s over

So we put our hands up like the ceiling can’t hold us

Yesterday was the start of the main purpose of our Texas trip and hopefully bigger and better for our best dude. Max had his SEEG with Dr. Curry at TCH.  They ended up placing 31 electrodes instead of the initial possible 26. They wanted to cover their bases and explained specific reasons for placing electrodes in given areas. One of the members of the team was saying that Max flushes when he has a seizure so they wanted to place a lead in his thalamus. He also becomes nonverbal and we know he has tubers (benign tumors that are part of his TSC) in his left temporal lobe. That is generally where language is housed and where a lot of Max’s epileptic activity seems to fire from so there are  A LOT of leads throughout there. She went on into more detail and explained location and purpose. I can definitely appreciate the thoroughness and the scientific aspect of this process and we value a team that lets us have a place at the table. 

Surgery was long, about 7 hours in total. They do imaging and place markers for ROSA (robotic surgical assistant) so that there is a map of where Max’s brain is located. Then there are anchors placed in the bone to hold the electrodes in place. Each electrode is very thin and is placed in a very specific region that they want to monitor as a possible seizure starting point. Once all the electrodes were placed, they did a CT to ensure there was no bleeding and everything looked good. The team was amazing about updating Matt and me throughout the surgery. We received updates on an app, phone calls from the OR, and a surgical assistant would periodically come out and touch base with us. 

Max did great and we were allowed back in recovery to be with him as he finished waking up. He was doing well but oxygen was dropping a bit so they had him on oxygen through the nasal cannula and that was making him MAD. Otherwise he was ok, just very sedated. Dr. Curry came and checked in with us and let us know how everything had gone. We waited for a spot to open for us and got up to our room. 

The tech came in and hooked all Max’s leads up to the EEG monitoring. The room also has video and audio monitoring so there will be full tracking of his seizures. Max took his night time epilepsy meds and settled in for the night. He woke up at about 1 am telling me he was hungry, only to start puking. He was experiencing some pretty intense nausea so they gave him pain and anti nausea meds and he fell back asleep. The team had warned us that sometimes after implantation seizures can take a break. They also ensured us that if they did, we could lower Max’s meds to induce seizures. I told them that I couldn’t remember the last seizure free day we’d had so I didn’t think we would have any problem getting data and I was right.. Maybe too right.

Max had a pretty big seizure this morning needing rescue medication. Then he later had what I was describing as a terrible seizure remix. It was basically every seizure presentation that Max has had clustering, so he needed rescues again. Then the team determined that they didn’t like the build up and closeness of the smaller seizures  we were still seeing and decided to give Max some more proactive rescue meds. There were some bouts of nausea and vomiting mixed in there too. They were asking if these were like what we saw at home and I said yes, but not to such intensity. Max’s seizures are active, but today felt like a volcano erupting. It is a bizarre place to be in mentally. We spend most of our time willing seizures away and doing anything to get them to stop; yet here we are welcoming them so we can map them and hopefully get a solution. It was a very long day for all three of us. I know we need to be here and if anyone can help us, it will be this team but that doesn’t make any of this any easier.

Hoping tomorrow brings a little less “data” for the team to comb through.