Thermocoagulation and dashed hopes...
As the warm weather is now upon us I take a look back at this time last year. George should have been taking GCSEs but instead we were gearing up for an operation that we hoped would change his life. People who know us well will know that we associate good weather with hospital stays and last year was no exception!
After years of waiting, several tests, and trying dozens of different medications, we finally met with the surgical team at GOSH last February. At this appointment we were told that George was a candidate for invasive monitoring - a stereo EEG, to see if they could find a focal area for the seizures. The theory being that if you can point at it, you can remove it... This was our biggest hope and whilst there were obviously risks attached we had agreed to it before we even left London that day. There was a nine-month waiting list so we tried to put it out of our minds whilst planning for some time out in September/October!
Then in April we received a call inviting George for surgery in June and this became real. There was lots to organise - childcare, time off work etc, and family and friends were called upon. After more tests and GOSH visits, George and I headed up to Great Ormond Street Hospital for what would be our longest stay yet. We were taken through the procedure by the surgeon, swabs and bloods were taken and George and I signed numerous consent forms and taken through the risks (stroke, paralysis and death to name a few) - but this was something that we all wanted and hoped would deliver a positive outcome for George.
On a sunny Friday morning Phil, George and I headed to the ward for George to have his first general anaesthetic. The doctors were calming, and George was talking about Legoland as he fell asleep. The operation took about four hours: 13-15 tiny holes were drilled through the skull, then electrodes were both implanted directly on the surface of the brain and (scarily) deep inside the brain towards the areas that previous tests had indicated as focal points for the seizures. Each electrode was carefully fitted to avoid any important areas like vision, memory and speech. Immediately after the op, a CT scan confirmed that the electrodes had been seated correctly.
George was left with a bad headache but generally recovered well from surgery. It was then we realised how aggressive the week was going to be. Unfortunately to understand what triggers a seizure, and monitor what happens when a seizure starts, a number of seizures had to be induced. Medications were reduced, and by morning George had his first tonic clonic of the stay and within hours he had his second. By Monday evening they had the information they needed and thankfully his medications were increased again to stabilise him.
The next testing was incredible - and would have been really interesting if not my own child. By hooking all of the electrodes up to another machine we were able to see how parts of his brain work, induce more seizures, give him funny sensations, smells, and even alter his vision. Wow!
Unfortunately after a week of testing we were given the devastating news that instead of a clean focal area that could be operated on, there were multiple focal points to the epilepsy, each too spread out and too deep within the brain. Trying to remove the damaged areas could leave George with significant deficits, paralysis and possible loss of function, and despite this, might not even leave him seizure free.
At this point we were reminded just how forward thinking GOSH is though as we were offered a new technique known as thermocoagulation. The electrodes that were previously used to monitor the brain, would now be used to zap specific parts of the brain to try and damage the multiple seizure focal points. This was a brand-new technique and there were only a few machines in Europe, with the closest available machine in Lyon, France. More risks were explained and this was not quite as quick a decision for us. After lots of reading we made the difficult decision to give it a go - even though the machine would take 3-4 days to arrive lengthening our stay over a weekend and into the following week. All I can say is thank you so so much to our friends and family who visited, called and messaged that weekend and kept us sane. We were all at a difficult time in our lives, trying to accept what couldn't be done and very nervous about what would be tried next.
The procedure itself only took minutes and literally made a zapping noise inside George's head... somehow he managed to stay calm during the procedure - who knows how! However, the team were not able to coagulate all of the areas they had identified; some were too far from the electrodes; some were too close to functional areas of the brain; and some focal areas had not been identified on the earlier scans so were not accessible. Therefore they were not confident that the procedure would be successful. Ultimately, we do believe there was a decrease in tonic clonic seizures over the summer, but as anticipated the effects of the thermocoagulation wore off over about six months, and 'normal seizure activity resumed'. We are still glad we tried both operations even if we now have to rule-out a surgical fix in the next few years at least. We would not want to go through those weeks again but at least we know we have tried everything available so far.
A BIG Thank You to the Shooting Star Children's Hospice Nurses
During these two weeks the nurses from Shooting Star Children's Hospices visited George and spent a few hours playing games allowing us to head outside for fresh air and food. He also stayed at the Hospice after the operations and had home visits. We are so grateful for what they did and how they made George giggle during a horrible time. We were lucky enough to receive hospital entertainment and lots of friends and family who made the weeks a little easier. Every visit, text, email, message and card meant the world. This is just one of many reasons we want to thank the hospice and their staff for all their varied support. Please do support through our events or fundraising if you can!
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