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.

No Seizures is Normally a Good Thing...

Let me start off by saying that leaving Seth at the hospital on Wednesday was heartbreaking. Even though he was with his dad, I felt awful leaving him there, so far away from home. Not only was I leaving him, but I was also giving up control and my direct access to information. As a mom, this was not an easy thing for me. On the other hand, allowing Tony the opportunity to be there with Seth really helped him to become more connected to the whole process.

The week was a long one, as Seth did not have even one seizure while hospitalized this time. We were told this is fairly common and is related to the environment - being confined to bed in a hospital room and not doing any normal activities or having any typical demands placed upon him. It still baffles me that Seth can take his medication regularly at home, get adequate sleep, etc and still have seizures. But put him in a hospital room, take him completely off all meds and sleep deprive him for three consecutive nights and we get nothing. It was disappointing that we could not complete the testing, but it was not for lack of trying. We continued to see lots of spikes on the EEG from increased electrical activity in his brain, especially as he goes to sleep, but nothing that developed into a full fledged seizure. Seth did everything that was asked of him, despite being completely exhausted from lack of sleep and having a great deal of difficulty focusing and concentrating. 

Regardless, the week was not a complete loss. While they could not complete the ictal SPECT, which requires injection of the isotope within 30 seconds of the start of a seizure, they did complete the interictal SPECT on Friday. The interictal SPECT can only be completed when he has been seizure free for 48-72 hours, so this was accomplished prior to discharge on Friday afternoon. We will have a follow up appointment in the next couple weeks to discuss next steps.

Seth returned home on Friday evening and within 15 minutes was already fighting with his younger brother. While I welcomed the return to normalcy, I had hoped the honeymoon period would have lasted a little longer. Since I was home with our other two sons for a couple days this time while Seth was hospitalized, I saw the stress they felt from having our family separated, and from having their parents preoccupied with Seth's medical issues. I know it must be hard for them, and I want to do my best to make sure they're not feeling left out or less important through all of this. All three of them are amazing and inspiring to me.

Getting Good at Waiting

Seth and I arrived at Children's yesterday and have been somewhat patiently waiting for a seizure. It's so ironic that they come at the most unexpected times at home, and then when we're here, ready and waiting, we continue to wait.

 Getting the electrodes connected for the EEG

Working on a sticker book while we wait for a seizure

Seth still wasn't feeling well yesterday and had an elevated temp again last evening. Due to potential viral illness, he is on contact precautions, which means that any staff entering the room must wear a gown, gloves and mask. His temp has been normal today, so hopefully contact precautions will be lifted in the morning. Seth has been completely off one medication since Sunday, and we are continuing to taper his second med as well. Additionally, we did sleep deprivation last night and will continue until he has a seizure. We are also trying exercise to help induce a seizure, so Seth is using a recumbent bike periodically throughout the day. 

I'm not sure this is exactly what they had in mind...

Tomorrow Seth's Dad comes to stay with him, and I will go home to be with our other two sons. It's not ideal to have to leave mid-week, but necessary. Still hopeful that we will have some seizure activity before I leave, but it's looking more like the SPECT won't be completed until Thursday. Fingers crossed that we can make it happen!