Flynn's Neurosurgery Journey

Next week, the Nash family will be headed to London for Flynn's brain surgery. Since many have offered to help, I thought this would be the best way to provide support to Erin, Paul and Emily. Donations will be used for food, parking, transportation costs including gas to and from the hospital for Emily to visit, any hospital or medical needs and anything else to support them during the next few weeks.

Here is an update from Erin, Flynn's mom:

"Flynn's journey has been down and up since he was 27 days old.

After neurosurgery in Jan.2019 Flynn went over a year seizure-free and we were weaning him off his medication when the pandemic hit.

Flynn started having Focal Tonic seizures again, this time only in his sleep every week or so.

In Sept 2021 He started having Myoclonic seizures during the day. They look like he is excited and he squeezes his torso with his arms straight and smiling.

He was admitted to London hospital (LHSC) for a 5 day EEG where they weaned him off his meds to see the seizures he was having.

The good news the Myoclonic seizures are not affecting his consciousness so they aren't concerning to the doctors.

The hard part was seeing Flynn have his Focal tonic seizures every 2 hours and they got longer and longer, starting for 30 seconds to 2min, 4 min and over 6 minutes.

It is really tough when his vitals drop the nurse gets out the oxygen and writes down his lips/face and hands going grey.

We stayed in the Ronald McDonald house for those days until they could get Flynn's meds back up to level and Flynn stable enough to go home.

The have found he has 2 types of Tonic seizures. They look kind of similar so they suspect they are happening in the same region of the brain.

In May and June 2022 Flynn may have had a couple absent seizures at school and home.

This is where he freezes up, unresponsive and loses consciousness for about a minute. He doesn't fall with these ones as he doesn't lose muscle tone, thank goodness!

In September, Flynn had a tonic seizure in the morning, while awake. He slumped over the bed and fell to the floor.

A few days later he had another in the morning while awake, and luckily hadn't gotten out of bed. This is a new thing having them while awake. They have increased his meds and so far haven't had any others during the day.

We had Flynn's surgery consultation on the 12th of October and they have given us the surgery date of Monday, October 31st.

During the first surgery they put the electrodes directly onto his brain.

They leave the electrodes on for two weeks (connected to the wires which will be screwed to his skull and plugged into a box, which Flynn has to carry as a bag. These connect to the computer for the EEG) as we wean him off of his meds to monitor and document the exact seizure activity to determine where they start and the pathway they take.

This is the hardest part- seeing him suffer through seizures after seizure.

After two weeks he will have the second surgery where they remove the electrodes and the piece of brain causing the seizures.

Recovery after the second surgery could be a few weeks depending on how well he does."

Thank you to everyone who has already offered well wishes, prayers and messages. Please do not feel obligated to donate. Love, thoughts and prayers go a long way!

Thank you!

Stephanie

(Nash Family friend)