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!

Inpatient Again

Tomorrow morning Seth and I return to Children's for another inpatient stay for more testing. This time we are going to try again to complete the SPECT scan, which requires him to have a seizure, and be injected with an isotope within 30 seconds of the start of the seizure. This will help further pinpoint the areas of the brain that are active during a seizure. This also requires continual video EEG monitoring. Seth is not looking forward to more electrodes, but missing a week of school does sweeten the deal!

We started tapering Seth's meds on Friday night, and by this evening he is now down to one medication. He has had a cold for several days, and started feeling worse today. As the afternoon progressed, he was having chills and complained of a headache. Knowing that Seth is more prone to seizures during periods of illness, and due to the fact that he is on reduced medication, we were monitoring him closely. Shortly before 7pm he had a seizure that lasted several minutes and then spiked a fever. Seth's headache worsened afterward, and he was quite uncomfortable until the ibuprofen took effect and gave him some relief.

My hope for this week is that the SPECT can be completed. Once Seth is admitted, he has to have seizure activity before they will attempt the SPECT. Since we've already seen a seizure tonight, I'm keeping my fingers crossed that this will be accomplished, and quickly. Time will tell...

Feeling Hopeful

Seth had another follow up appointment today. Tony was able to go with us, as we had many questions and needed more information. It was a very good appointment, and we were able to get many answers. Some questions the doctors just don't have answers for yet, but they will come in time. The doctor spent a tremendous amount of time with us and put us both much more at ease. We are scheduling further testing and hope to only have to stay inpatient for a few days this time.

Recently, Seth has been asking some questions about surgery and expressing his fears. We have been open and honest with him, and have shared that we will do whatever is best for him. After dinner the other night, he told me that if we think brain surgery can help him, he will do it. This incredible boy continues to melt my heart with his trust in us and with his courageous attitude. What a blessing to be his mom!