We left off sending Max into surgery to get his grids placed. It was done more quickly than anticipated which was good. We did end up in recovery for 6 hours because our room wasn’t ready in the ICU. Since we had so much downtime in the PACU room, I was able to get his CT bumped up to be done while he was still pretty sedated so we didn’t have a repeat of the previous terrible experience with him trying to lay flat on a sore head.
He did pretty well initially with a little nausea and “hurling” (his words). Then pain amped up more than with previous surgeries. His morale was pretty low too. Keep in mind this was brain surgery number 4 in about 4 weeks. Tuesday was the roughest day as far as pain goes. Max was having some facial swelling and looked like he was going to get two black eyes. He also hasn’t been a fan of the drain he has this time.
Morale has been improving with the influx of mail from friends and family at home, video chats, and the child life here. We’ve been able to have regular visits with Pinto and his little sister Bailey when we were over in the ICU. The music therapy has been so good too. When she came Tuesday it actually gave me happy tears. It was the most Max has struggled and she brought out some smiles. Pretty soon there was a crowd of doctors and nurses rounding in the hallway and they stopped to listen to Max’s song about Pinto Beans who loves elevator snacks and his best friend Max. We’ve had multiple people here tell us that they know they’re not supposed to have favorites but Max is theirs. He is so strong and brave and his perseverance is incredible. He leaves an impression on people and it’s why we’re here. If he is this amazing, funny, curious, smart, caring, compassionate kiddo with the sunniest attitude WITH this heavy seizure burden, he deserves the chance to find out who he is with less of a burden. I hope so hard that is what we get from this.
We played a little musical rooms and are now back to our spot in the EMU. Wednesday involved mapping with the grids in. Mapping with the grids was tedious but important. It involved Max being hooked up to a portable EEG machine via his head grids. It was a full house with me, Max, 2 techs, and two epileptologists. They systematically work their way through his grid electrodes and increase the levels of stimulation incrementally. They time and document his reactions and length of time it takes him to respond. They also watch his brain waves on the VEEG machine to see if stimulation causes the start of a seizure or irregular firings. I had to hold up cards for Max within time increments. They would say things like “4×5”, “raise your right hand”, or “ hammock”. He would have to complete one from each category/ stim level/ electrode. He has sixty something electrodes in there so it was A LOT but he toughed it out. Mapping helps them determine where Max’s language is, or isn’t compared to the tuber and where the seizures are firing from.
This morning involved an MRI to get some really good solid pictures of Max’s brain. He was determined to do it without sedation. They blocked out time in case he was struggling. He nailed it! He completed it in 26 minutes “WITHOUT MOVING AT ALL MOM!”. He is very proud and we’re proud of him. I don’t know anybody who could go through everything he has gone though and still be who he is.
Here’s the BIG NEWS of the day: There was a surgery cancellation tomorrow which leaves an opening for us. Max’s resection just got moved from Monday to tomorrow which is awesome and terrifying all at once. We came here hoping to find a solution to cut Max’s seizure load and we’re so hopeful with all the hard work he and the doctors have done that this will do just that. It has been a long and wild ride but I have to think it has been for something.
