Kate's Story: Part 2

Okay, friends... Here is part two of Kate's story, as told by Mom, Michelle. To go back and read part one, click HERE.

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Joe and I knew that we had to re-consider the surgical option.  The good news is that we didn’t have to re-do all of the testing.  But the bad news was that the original neurosurgeon had left Children’s Hospital.  It took several appointments and conversations with Kate’s Epileptologist and the new neurosurgeon before we made the decision to go forward.  Based on her previous testing, we knew the seizures appeared to be localized in the right temporal lobe but the specific focal area was not found.  Therefore, a move invasive type of surgery would be required.  It’s called a craniotomy with subdural grid placement and it’s done in two surgeries.  In the first surgery, the skull is opened and sheets of electrodes are placed directly on the brain.  It’s an EEG on the inside versus the outside of the head and can hone in on the specific initiation point of a seizure.  Things are closed up and the next phase is waiting for multiple seizures to be captured.  It’s important to get more than one seizure so that the location can be verified and validated.  Once the seizures are captured and analyzed, an area for resection is identified and removed in a second surgery. 

That’s right, folks—we’re talking about removing the area of the brain where the seizures are occurring.  It took nearly three years and trying over 10 different AEDs to convince us that surgery was the best way forward.  However, we wouldn’t have considered surgery if total or at least significant seizure control wasn’t possible.  We also wouldn’t have pursued surgery if there was significant risk to her core brain functions.  Two big factors working in Kate’s favor were the location of the seizures and her age.  Kate is right-handed.  In the vast majority of right-handed people, the left side of the brain is the dominant side which controls important things like speech, motor functions and memory.  Resection in the left temporal lobe would have been much more of a risk for Kate.  And second, Kate’s age was another benefit.  At 5, her brain was still growing and developing.  Because of all that we’ve gone through and the potential for success, we set a date for the first surgery on July 11.  We tried to plan it during summer break so there would be a good amount of time afterwards for rest and recovery. 

As the surgery date got closer, we tried to make the most of our time and preparing for what was expected to be a long hospital stay.  Since Kate was on multiple AEDs and the seizures didn’t follow a predictable pattern, the doctors started to wean her off of some of her medications before surgery.  Once the grids are in place, the faster they can capture seizure data the better.  Because the skull plate isn’t completely sealed while the grids are on, there’s a great risk of brain fluid leaking or developing an infection.  Barring any complications, the neurosurgeon told us that he wouldn’t keep the grids in place for longer than 3 weeks in order to capture seizures.  While my greatest fear was encountering some complication that would cause the unthinkable, I was also scared of the possibility of Kate being hooked up for 3 weeks and not having any seizures in the hospital. 

As I mentioned before, Kate was “blissfully unaware” of her condition but would sometimes talk about having headaches.  In speaking with a neuropsychologist about how to prepare Kate for surgery, he recommended that we keep the information as simple as possible and talk about fixing the headaches.  She was so incredibly brave as we went to the hospital and started the patient intake process.  I, on the other hand, was a complete disaster on the inside and could hardly keep it together as waited to be called into the pre-op area.  I was determined not to let her see me cry or show my fear, but how can a parent stay composed when you know that there’s so much at stake? 

The first surgery was incredibly long—nearly 8 hours from start to finish.  Fortunately, my sisters arrived from West Virginia to help out and my mother-in-law was taking care of Sam. As expected, Kate looked pretty rough after surgery and spent the first night in the PICU.  The next morning she was moved to the neuroscience unit for monitoring. Grid patients have the good fortune (in my opinion) of having a full-time nurse in their room 24/7.  It’s probably incredibly boring for the nurses, but it’s great for the parents.  We had an extra pair of eyes on Kate at all times (which allowed us to sleep) and ensured that she kept her hands away from her head.  We were very fortunate to have excellent nurses throughout our entire time. 

 

As we expected, Kate went several days without any seizure activity.  To be honest, she was doing better than I expected in terms of tolerating the pain and being limited in moving around.  It helped to have a lot of people around her most of the day to keep her occupied, and the ChildLife services helped a lot.  As the doctors continued to wean her medications, she finally started to have some electrographic seizures.  These seizures are normally only detected by EEGs and aren’t physically noticeable.  Unfortunately, they didn’t really count as “real” seizures.  But something was starting and we were getting incredibly anxious. Finally, 6 days after surgery, the real deal started.  Over the course of 2 days, she had 6 seizures.  It felt wrong to be happy that she had the seizures, but we felt so relieved. 

By some good fortune, our Epileptologist was serving as the Attending Neurologist while Kate was in the hospital.  She was responsible for reading the EEGs and reporting on the location of the seizures.  She broke the news that while the seizures were starting in the right temporal lobe, there were also indications of spiking activity in the Peri-Orbital region of the brain.  This new information completely threw us for a loop.  We had expected that everything would be limited to just one area of the brain.  Now we might be faced with a new surgery to add additional grids to the Peri-Orbital area and then waiting for more seizures to ensure we remove all of the appropriate areas.  But what functions would be affected by resecting areas of the Peri-Orbital region?  I was in agony all over again.  To complicate matters even further, Kate’s head wrapping seemed to show a lot of new leaking.  While the neurosurgery team seemed to think this was from the bonding element used to keep the skull plate closed, leaking isn’t a good thing.  We needed to make critical decisions fast.

After reviewing all of the current seizure information and all of Kate’s previous diagnostic testing with the heads of the Neurology and Epilepsy Departments, our Epileptologist and Neurosurgeon met with Joe and me to provide a recommendation.  It was their opinion that the seizures were starting in an area in the right temporal lobe and then spreading quickly to the peri-orbital region.  This would explain the spiking found on the EEG.  There was no need to resect any part of the peri-orbital region.  Upon further review, there appeared to be a lot of residual activity remaining in the right temporal lobe after the seizures started.  Because of this, they recommended a complete removal of the right temporal lobe.  Not just small section of the temporal lobe as we originally believed – a full temporal lobectomy. 

Once again, we were floored.  It was good to hear that additional sections of the brain were not going to be impacted, but now we’re talking about removal of an entire part of the brain.  This was not how I thought things were going to play out. And again, we didn’t have the luxury of time on our side.  The second surgery had to take place the next day (Friday, July 19) or we had to wait until Monday.  We were fortunate that both doctors spent an extraordinary amount of time with us to review every risk and discuss every possible concern we had. It wasn’t easy, but we decided to do the full temporal lobectomy.  Later that night, I was full of nerves and unease.  I texted Bethany with news of what was happening and provided more details than she was prepared for.  Bless her for listening because I think “talking” it over helped to settle my mind on our decision. 

(Ahem… It is I, Bethany, interrupting for a second to say that at this moment when she was texting me, I began to look at flight info to see if there was any way possible that I could come and hold Michelle’s hand. So, she was NOT being a bother, and I was prepared to move mountains to be with her… Okay, continue!!)

The second surgery was almost as long as the first, but went just as planned.  Of course, everyone was waiting for her to move, talk and recognize us.  When she woke up and was alert, Joe began showing her pictures on his phone.  She was able to recognize and say the name of Sam, our dog and her cousin.  That was a huge sigh of relief.  Following surgery, she slept a lot and it took a while for her to start eating regularly.  It’s standard protocol after this surgery for Epilepsy patients to return as soon as possible to their regular AEDs for up to a year.  Kate had been on Dilantin again during surgery because it’s one of the few AEDs that come in IV form.  During the transition back to her regular AEDs, she had two seizures in the hospital.  At this point, we were unsure if the seizures were due to the surgery or because of the changes made in her medications.  Either way, we were so disappointed and scared that this meant that the surgery didn’t work.  Ultimately, she would have two more seizures soon after leaving the hospital.  In looking back, it now appears that the seizures were caused by the weaning too quickly off one of her medications and adding another back too quickly. 

 

Following surgery, Kate did have some difficulty getting back on her feet. She needed a lot of support to move around and physical therapy was started.  Upon our release on July 25, a walker was ordered for her.  By the time we received it, she was already getting around just fine.  We did start regular occupational and physical therapy appointments after her release and I believe they have been really helpful.  Her language and talking also took a little time to return to normal.  But in the weeks following surgery, she made noticeable improvement in expressive language and understanding.  And for now, there does not appear to be any negative impact to her memory.  The incision area was 27 inches long and took the shape of a backwards question mark.  This was the only area that was shaved and her hair is growing back quickly.  We were also very fortunate that no infections developed while she was in the hospital or afterwards.  And, most incredibly, Kate was ready for the first day of school.  She’s still in the special education class and has some difficulty with her behavior, but there’s gradual improvement every week.

It’s now been 12 weeks since her last seizure and we haven’t detected any seizure activity.  No strange eye movements, jerking, or twitches that would normally be the beginning of a seizure. Even still, I watch her like a hawk because after nearly three years I can’t let my guard down.  If Kate remains seizure free for 6 months, we may begin weaning her off the AEDs.  Until then, we’ll celebrate every seizure free day as a victory and continue to pray for families affected by Epilepsy. 

Thank you, Bethany, for letting me share Kate’s story!

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Thank YOU, my sweet friend!! We are so very thankful that Kate is thriving!! Thank you for giving us insight into your journey... We will commit to pray for Kate (well, we'll pray even MORE!), and will check back in at that exciting 6 month mark!!