One down, one to go
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Lewis/Laczko family
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Lewis/Laczko family
We made the early 5:15 a.m. walk yesterday from our hotel to the medical center. Leo hadn't eaten or had anything to drink since the night before in preparation for surgery, and though the procedure was delayed from 7:30-11 and he was surely hungry, he was a real champ about it. While we waited, we wheeled him around the pediatric floor in a wagon.
Leo was with anesthesia and neurosurgery for 6.5 hours. (There's a great deal of meticulous setup and caution, because the actual robotic surgery only takes 45 minutes!) We spent that time walking outside, working at the hotel — and experiencing a minor earthquake. Unbelievably, we were able to relax, because we have the utmost belief in this neuro team; the neurosurgeon is literally the best. Everyone we encounter holds him in such high regard. And the anesthesiologist who was going to be with Leo throughout the procedure told us Monday morning that the team would take care of Leo as if he's their own. And he himself has a 20-month-old son, so I'm sure it was emotional.
Once sedated, Leo had his head shaved and then nine electrodes were placed on his brain — six on the left, three on the right — as well as the typical EEG nodes on his scalp to serve as more coverage and double-checking. He's been in and out of sleep post-anesthesia, which made him nauseated, and he's still a little confused. His head is wrapped very securely, but it's also very heavy. We're apprehensive about how mad or frustrated he'll be once fully awake.
Leo's second surgery is scheduled for Friday, depending on the SEEG's findings, but it'll possibly be bumped into next week since his seizures are infrequent (for which we're typically so grateful, but in this case, we need those seizures to appear). All of this is a necessary hardship that gets Leo closer to seizure freedom, which will allow his brain to continue developing all the skills he's been working so hard to master. We're thankful that Leo is a surgical candidate at all, as so many PMG kids are not. While walking outside in the sunshine Monday, passing the time during Leo's procedure, I thought, "What if this is actually a joyous occasion? Can we reframe this as the start of a beautiful next?"
This photo is from Sunday's pizza lunch — a carb-loaded meal that had our Leo quite jazzed.
Leo was with anesthesia and neurosurgery for 6.5 hours. (There's a great deal of meticulous setup and caution, because the actual robotic surgery only takes 45 minutes!) We spent that time walking outside, working at the hotel — and experiencing a minor earthquake. Unbelievably, we were able to relax, because we have the utmost belief in this neuro team; the neurosurgeon is literally the best. Everyone we encounter holds him in such high regard. And the anesthesiologist who was going to be with Leo throughout the procedure told us Monday morning that the team would take care of Leo as if he's their own. And he himself has a 20-month-old son, so I'm sure it was emotional.
Once sedated, Leo had his head shaved and then nine electrodes were placed on his brain — six on the left, three on the right — as well as the typical EEG nodes on his scalp to serve as more coverage and double-checking. He's been in and out of sleep post-anesthesia, which made him nauseated, and he's still a little confused. His head is wrapped very securely, but it's also very heavy. We're apprehensive about how mad or frustrated he'll be once fully awake.
Leo's second surgery is scheduled for Friday, depending on the SEEG's findings, but it'll possibly be bumped into next week since his seizures are infrequent (for which we're typically so grateful, but in this case, we need those seizures to appear). All of this is a necessary hardship that gets Leo closer to seizure freedom, which will allow his brain to continue developing all the skills he's been working so hard to master. We're thankful that Leo is a surgical candidate at all, as so many PMG kids are not. While walking outside in the sunshine Monday, passing the time during Leo's procedure, I thought, "What if this is actually a joyous occasion? Can we reframe this as the start of a beautiful next?"
This photo is from Sunday's pizza lunch — a carb-loaded meal that had our Leo quite jazzed.
Comments
Mark Voeltzke
Blg722
Ktillman
and to do the best for Leo. Love from all of the Tillmans.
Lanlew0225