Less Than Two Weeks to Go

We are less than two weeks away from Seth's scheduled surgery and tomorrow we return to Children's for another MRI and pre-op labs. We will also be meeting with the anesthesiologist during our visit. Seth is delighted to miss school tomorrow and I feel thankful that he is enjoying simple pleasures and not feeling completely overwhelmed by what lies ahead. At the end of the day, he is still a nine year old boy (almost 10!) who finds great joy in teasing his brothers because they have school tomorrow and he doesn't. 

As anyone can imagine, I have been feeling a lot of stress and anxiety as we near the surgery date. I appreciate the friends and coworkers who ask about Seth, but then talk about normal, everyday things with me. I probably think about something related to Seth multiple times every hour of every day. I welcome the normalcy when friends and I can laugh about something silly that happened the night before, share parenting frustrations or complain about an issue at work. Because sometimes my thoughts about what is to come seem all consuming to me, I appreciate those who can just relate to me as Amy - friend, parent, coworker.

Goodbye Summer...

The summer has gone quickly and school starts later this week. Although we had hoped to have Seth's surgery completed this summer, we were not able to get it scheduled until September. We are quickly approaching his scheduled surgery date and I will be relieved when we get there. Waiting has been hard. Knowing what is to come, we are just ready to do it and get "the surgery" behind us.

We have prepared for the school year as usual, buying new school supplies, making sure uniforms fit and getting new school shoes. But preparing for a new school year for Seth also means educating the teachers and staff who will be working with Seth this year. That involves updating his seizure plan and making sure that everyone involved in his care and education is informed about Seth's epilepsy, what his seizures look like and what to do when he has a seizure. I need to make sure the school nurse is up to date on current medications and any changes or new information I have about Seth's seizures. I also need to make sure that classroom teachers, his tutor, speech therapist and school bus driver have access to information. In reality, I can't be there with Seth all day, every day, so I need to do what I can to make sure I have prepared his educational team with the information they need to handle Seth's seizures effectively and assure his safety while he is in their care.

While the lazy days of summer are coming to an end and the sometimes hectic schedule of the school year will be here before I know it, I am ready. I am ready for the school year, for Seth's surgery and look forward with hope to the future.

What Doesn't Kill You Makes You Stronger?

My youngest son was playing today and he often sings while he plays. From the other room I heard him singing the lyrics to Stronger by Kelly Clarkson - "what doesn't kill you makes you stronger..." I stopped and thought about the words coming from his mouth, wondering if they are really true. So many times people make comments about how strong I am because of what we're going through with Seth. Funny thing is, most days I don't feel strong at all. Some days, I wish I could give up and walk away, and not think about seizures or surgery or medical bills ever again. Many days I would rather pull the covers back over my head in the morning and sleep the day away, avoiding reality. I never wanted to know so much about the brain anyway.  I could be perfectly fine if I never had to think about anti-seizure drugs or spikes in brain activity or seizure precautions again. Why did I get picked for this role?

The thing is, I just don't have a better option. Whether I want to be or not, I am Seth's voice, his advocate and decision maker. As every parent wants, I too want what is best for my child. Unfortunately we've had to make some really tough decisions to try to get there, but I don't know if that makes me stronger. Will they be the right choices? Only time will tell. But I know in my heart that I am making the best decisions I can make for Seth right at this moment. And someday maybe I will know whether I really am stronger. 

Surgery is Scheduled

Since my last post, we survived what will forever be known as the Great Derecho of 2012 and the ensuing eight days without electricity. I am happy to report that we are back on the grid and enjoying the comforts of refrigeration and lights. 

We were recently contacted by the neurosurgeon's scheduling nurse and notified that Seth's surgeries have been scheduled for September 11th (the day after Seth's 10th birthday) and September 18th. While we had hoped to have surgery completed during the summer months to give Seth ample recovery time before the start of school, we weren't able to make it work. Therefore, he will start school for a couple weeks and then will be off for at least a month for the surgeries and recovery. After a couple weeks, providing there are no complications, he should be able to gradually start returning to normal activities. We have notified the school that he will need home tutoring throughout the recovery period, and will start the process of requesting those services next month. 

Once the grids are placed after the first surgery, we will need to wait for Seth to have a seizure, and the hope would be for him to have at least three, to get exact measurements of the seizure origination points and complete brain mapping. In order to prime Seth for seizures, his medications will be reduced a full week before the first surgery. Since Seth did not have any recordable seizures during his last inpatient stay for video EEG monitoring, of course I asked the question. What if? What if we wait an entire week and Seth has no seizures? If Seth does not have a seizure prior to 9/18, the second surgery would be delayed a week and we would continue to wait. They will not leave the grids placed any longer than three weeks, and I pray that we won't be waiting anywhere close to that length of time. 

Best case scenario, Seth would have a cluster of seizures within days of the grids being placed and we find that the seizures do not originate in either the language or movement areas of the brain. The second surgery would be performed as scheduled and we would be able to bring Seth home several days later to continue the recovery process at home. 

Although Seth has not wanted to talk much about his upcoming surgery, he seems to be accepting of what is to come. I am encouraged by Seth's faith and trust in me, and am pleased that his biggest concern right now is not missing a favorite TV show. Please pray for Seth's comfort, of both body and mind, throughout this whole process. While I have many concerns on my mind, the greatest is helping my sweet boy to come through this with peace of mind and a healthy brain and body. 

It's a Go!

After months of waiting and wondering, we found out some positive news today. We have been given the green light to proceed with surgery! All of the testing indicates that Seth is a good candidate and we have made the decision to go ahead and schedule surgery.

The surgery is actually a two part process. The first step involves them placing a grid directly onto Seth's brain surface in order to pinpoint the exact area where his seizures originate. Once the grid is placed, it would remain in place for at least several days and Seth would need to have at least one seizure. During this time, they would also map out Seth's language and movement areas. If the seizures originate within either of these areas, surgery could not be completed safely, they would remove the grids and we would not move forward. Otherwise, the next step would be the surgical resection in which they would remove the two areas where Seth's seizures originate. Best case scenario, Seth would have a 50-70% chance of becoming seizure free.

I feel both relived and terrified with our decision. I am so thankful this is an option for Seth, and hopeful that we get continued good news from here. We should know shortly when the surgery is scheduled and will continue to prepare Seth and the rest of our family for what's to come.

Little Disappointments

Sometimes I hate the way seizures disrupt our lives. Today is one of those days. Not only do I hate what they do to Seth, I also hate that they affect everyone else in the family too. I hate the way they sneak in and surprise us on an otherwise normal day. I hate the disappointment when our plans suddenly change. And most of all, I hate that I can't just fix it.

Today may have been the most gorgeous summer day we've had yet this year. As luck would have it, I had the afternoon off work, so the kids and I had planned to spend the afternoon enjoying the zoo. We piled into the van and headed North on the interstate. I noticed that Seth had fallen asleep in the van, and while not completely normal, it happens occasionally. We were more than halfway there when I heard a strange noise coming from the back of the van and realized Seth was seizing. We were near an exit, so I quickly exited and pulled off the road to monitor him until the seizure ended. The seizure was a longer one, lasting nearly five minutes. The other kids realized our plans had changed, and once Seth was able to respond, we started the drive back home.

Seth slept until we were a few minutes from home. When he awoke, he asked where we were, and I told him we had to come back home because he had a seizure on the way to the zoo. I immediately saw the disappointment and anger sweep across his face. The other kids were disappointed too, but they understood  and are pretty good at rolling with it. Generally I'm okay with it too, but today I just allowed myself to feel the disappointment, even wallow in it a bit. Because tomorrow is a new day and I'll find the hope in that.

Time Marches On

The last couple weeks have been blissfully uneventful on the seizure front. In that time, the school year has ended and summer is off to a good start with graduations and family get-togethers. Seth has been seizure free since Mother's Day and seems to be doing well. Time continues marching on and we are thankful for each day that passes without a seizure. So far this summer, we've had a couple opportunities for swimming at Lake Erie and my brother's pond. Due to the risk of seizure, Seth has to wear a life vest when swimming in murky water. Although this isn't his favorite thing, he has been cooperative and only slightly pushes the limits. I know he doesn't understand the danger, but that's okay. That's my job.

We have a follow up appointment scheduled with Seth's neurologist/epileptologist in two weeks and I'm not sure what to expect. I'm anxious to hear what is next and where we go from here. I don't know whether we can move forward without the ictal SPECT, or what new information may have been obtained from his most recent inpatient stay for long term EEG monitoring. I look forward to learning what's to come and am ever hopeful that we are one step closer to seizure freedom for Seth.