Ain’t no stoppin’ us now

We’re on the move

We made it to Texas safely on Tuesday. We brought along Frankie and my mom for a few days to squeeze in some fun and a little family downtime between pre surgical appointments and  before the big separation for all of us. Ever since we came to TCH for preliminary testing and evaluation, Frankie refers to it  fondly as T.T.Y.A.W.T.T.A.L.M.B. (The time you all went to Texas and left me behind). We have tried explaining that we spent nearly the entire time in the hospital and it wasn’t fun, etc. She just knows that we came and she did not. We hoped to remedy that.

 

 

 

 

 

 

 

 

 

      We have also realized how much our lives have been on hold, not just because of Max’s epilepsy, but also because of Covid. So this gave us the chance to give Frankie a few firsts. She had her first airplane and loved it. (She had her hands up in the air like she was on a rollercoaster and declared it  “the best day ever”). Matt recorded a good ten minutes of her hilarious and adorable commentary about how tiny everyone looked, how she was up in the clouds, and how she wasn’t scared. 

Wednesday we had our appointment to meet Dr. Curry. He will be taking the lead on Max’s SEEG surgery Monday. He was very thorough. He was easy to talk to and very receptive to our thoughts.  He said they had just conferenced again on Max’s case last week. He said that Max’s case is daunting, but he is not daunted. He talked through some of the possible scenarios that may come from the information they get from the SEEG.

• Resection – surgical removal of problematic parts of the brain that are determined to just be creating seizures
• Revision of the RNS paired with Resection- this would be done if it’s determined the leads were placed incorrectly or Max’s seizures have moved since placement and could be placed in his thalamus. Placement in the thalamus allows the probes to cast a wider net and cover more area. 
• Laser ablation- more precise removal of smaller areas- would be done with removal of the RNS because it’s too difficult to ablate with the device in place

We’re unsure right now which of these will be our option because it will be determined by Max’s seizures and data gathered by the SEEG. 

I did ask if full removal of the RNS could be on the table because it has been nothing but trouble for us. We’re unsure if it’s due to mismanagement/ dishonesty about experience  by the previous team, Max’s TSC progressing, or some other factor. Whether correlation indicates causation in this case  or not, I do know that since placement of the RNS we have had new and worsening seizure types, more emergency hospitalizations, use of rescue medications, and Max’s quality of life and ours has diminished tremendously. It has also made it so we are medical pariahs. Local epileptologists see the device and are unfamiliar with it so they are uncomfortable treating him. Regardless of the device, he is still a 9 year old having uncontrolled seizures. We have been waffling for over a year and a half and trying to find help. Dr. Curry did say that it could be on the table and that when he saw our case he wished they could have gotten us out there the next day. It has taken a long time because of covid and staffing shortages but I honestly feel we are in the right place and in the best hands. Matt and I have every confidence that this is where we are supposed to be right now.

After our meeting with the surgeon, we went to Galveston for a couple hours. Not only had Frankie never flown, she had also never seen  a beach or the ocean before. She loved the pelicans, the sand, and looking for shells. Max loved being able to show those things to her and it was really good for all of us to do something a little normal. Both kids were happy and exhausted. Everything we owned was covered in sand. We stopped at Buc-ee’s on the way back to the hotel. It was intense and apparently a world record holder for largest convenience store. We found 110 gas pumps, beaver nuggets, and some rad matching tumblers for Matt and me. 

 

Thursday involved labs, and a pre surgical meeting to discuss a little bit of what Max’s seizures have been looking like and how many we’ve been seeing (LOTS!).  We talked about what the anesthesia plan will be and some other things. Max usually has a really hard time with labs and needle sticks in general because he has been through so much. He did not so much as flinch this time.  We were incredibly proud of him and he was super proud of himself.  After this appointment, we were hoping to go the the Science Museum but it ran too long. We hit up the aquarium instead and that worked out great.

 

 

The aquarium was a good size for us because Max has been having quite a lot of seizures and been getting fatigued really easily. It was a new stop for all of us and an interesting one. We saw a Bengal tiger and the kids got to pet some stingrays. We headed back to have pizza and relax at the hotel. 

 

 

 

     Friday it was time to say goodbye to Frankie and Nana. This was really hard. Max and Frankie kept hugging one another and saying goodbye. Goodbyes are one of the hardest parts of this. We’re very lucky to have the support system we do and know Frankie will be busy, happy, and loved at home but it doesn’t make missing her any easier. Frankie said it best: “We have to take turns missing each other”, and that part doesn’t get any easier.  We’re excited to hear how our firecracker likes kindergarten and so happy that she was excited to go home to start it. 

We also got  a call Friday that Ronald McDonald house had a vacancy for us. The tears that have been ebbing and flowing all week for me turned into happy/ grateful tears. With no return date scheduled, this has been a lot to say the least and this will help tremendously. It really feels like things are finally turning for us and we’re where we need to be. For the first time in a very long time, we have not just cautiously optimistic hope but HOPE and I can’t wait to see what this brings for Max. If anybody can help us, it is this team and we are so grateful for the chance to be here and make things better for Max. Nobody deserves it more than he and Frankie do.