Friday there was a cancellation so Max’s surgery was able to get bumped up a couple days. We were excited because this is the BIG thing we were hoping for. It probably sounds crazy to hope to have Max qualify to have part of his brain removed but you have to understand what our existence has been like for the last two years plus. We also have done our homework and know the qualifications of the team we have here and worked hard to get Max into literally the very best hands possible. We needed something big to hopefully knock his seizure load down. We are SO hopeful that this resection is just that. We also were very excited to get bumped up because that puts us two days closer to getting home to our Frankie girl.
However, it also jump started Max’s nerves. It’s important to remember he’s a 9 year old who has now had five brain surgeries since we checked into TCH on August 22nd. Things are definitely catching up with all of us and we’ve hit a wall. He misses Frankie and home so much. He has been poked and IV’d, MRI’d, CT’d, and surgeried over and over. When he had the leads in for the two SEEGs and grids, he literally couldn’t move beyond standing next to his bed to use a bedside urinal and commode. He was under video and audio surveillance constantly so they could monitor seizure activity, and somehow managed to be his usual sunny self. I honestly do not know anybody else who could endure so much for four weeks and still crack jokes, and be personable and sweet, but he has.
Max was super nervous about this last surgery and I think they’ve pushed him to his limits. I make sure to advocate for him on everything and Matt and I take care of his personal needs to maintain as much space/ privacy for him as possible. We have button up old man jammies and comfy shorts so he doesn’t have to wear hospital gowns. We also have a great arsenal of tricks to draw from to keep him busy and distracted. We’ve taught him Old Maid, Crazy 8’s, Nuts About Mutts, Minecraft Uno, endless Legos etc. but that all loses its luster eventually. We are in “eventually”.
Max is now having a physical reaction every time they have to draw labs or put in an IV. This part is the worst because we have raised our kids teaching them bodily autonomy and then have to completely throw that to the wayside in situations like this. It’s also more things happening TO Max which is exhausting and hard to justify. So prep for this surgery was rough. The anesthesiologist ended up giving Max some ativan to help calm him down before heading back to the OR.
Surgery was long but we got regular updates and obviously didn’t want things rushed. Dr. Weiner came out and updated Matt and I afterwards. He said he felt very hopeful about the surgery. There were no surprises. The tuber was calcified which in our case is good because that would be indicative that it was all bad tissue and less risk of there being any deficit to Max’s language area or peripheral vision. I teared up from relief and that made his eyes well up as well and he said , “you guys have been through A LOT and this is a lot”. He also said he’s very hopeful that this will help Max and that it looks very promising and he feels very good about all of it. This coming from the man the nurses have nicknamed “Dr. Tuber” is enough to keep us floating a bit longer. He is truly a brilliant doctor but also very compassionate and “sees” not only Max but his whole family. You can tell he puts his heart into his job and this is why we are so confident in this past month. I thanked him profusely and he said to thank him in a year.
There was a miscommunication with the runner and a delay in us getting reunited with Mighty Max so he was a little more “with it” than he should have been before we were brought back. He was VERY upset. He was scared and MAD. His throat hurt from the breathing tube that had been in and his head hurt and he wanted us. He was pretty inconsolable so the anesthesiologist gave him a little medicine to have him fall asleep again and wake up a little more slowly. On the upside, his language was completely fine after an eight hour brain surgery where they were concerned about temporary or possibly permanent deficits. We were able to do a mulligan on waking up and he did much better on the second go round. He woke up and was talking about bug eating plants and corpse flowers within an hour of that- only Max. This is why he ends up being a favorite of the nurses.
We hung out in the PACU and then got a room in the ICU for the night. Max was incredibly crabby with any medical person that came near him that night because he had just reached his end but also very articulate and communicative about needing space. He has a Mr.Fredricksen (from UP!) persona that comes out in the hospital sometimes. He was like a curmudgeonly old man. He’d say he needed space with a well placed eye roll. Very atypical Max but great to see those reactive eyeballs and solid communication skills in full effect.
We got moved back to the 10th floor by the Epilepsy Monitoring Unit- our new home away from home. We got to see lots of familiar faces. Max is getting antibiotics via IV and anti inflammatories. He has a JP drain that hopefully comes out tomorrow. So far we haven’t seen any seizures but it’s also way too soon to tell if that is our permanent status. Seizure freedom might never be in the cards for us, and we went in hoping to significantly lighten Max’s seizure load. There are often honeymoon periods after brain surgeries for epilepsy where you see no seizures while the brain is kind of in shock. Conversely if we see a whole bunch of seizures soon, that doesn’t indicate that this was a bust. The way Dr. Weiner put it, Max’s brain is accustomed to having seizures all the time. It needs a chance to reset, almost like a computer being rebooted. Like most great things, it needs time. It has essentially been rewired by removing one of his major seizure sources. Now we let the dust settle and see where we are. PT came and worked with us today since he’s been essentially bedridden for 27 days except for a tiny break of 4 days. We’re working on building stamina and enjoying having Max up and moving. Hopefully tomorrow brings us some ideas of our plan going forward. Max is looking better every single day and we feel great about how things have gone so far.
