We Need Seizures!

Once again I'm reminded of the roller coaster we're on with epilepsy. Life can be going along smoothly and then suddenly Seth is hit with a seizure out of nowhere. On the other hand, at times like now, we desperately need him to have a seizure and we've got nothing. 

Seth had a very good weekend with few complaints of pain, but no seizures. Unfortunately that means no surgery tomorrow. Surgery is going to be rescheduled for a week from tomorrow, but if Seth would start having seizures in the next day or so, there is a possibility that surgery could be completed on Friday of this week. At this point we still have time to wait. However, if we get to next Tuesday and Seth has still not had any seizures, then we will need to talk about a plan to remove the grids. Seth's neurosurgeon is comfortable leaving the grids in for up to three weeks, but will not go longer. 

If we get to next Tuesday with no seizures, there could be a possibility that the grids will have to be removed and we would be sent home without being able to complete the surgery at this time. With all that Seth has been through, I don't even want to think about this as a possibility, but I know that it could be a reality. I will be so very discouraged if this is the case. Right now I am going to do my best to remain hopeful that we will get what is needed to move forward with surgery. 

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

Keeping an Eye On the Prize

Today was a good day. Seth had many visitors today, and despite extreme lack of sleep, seemed energized by the interactions. His brothers spent time with us today, along with his grandparents, aunt and cousins. It was nice to have a change of pace and Seth really enjoyed the attention. It felt good to spend time with Ethan and Aiden and to hear about their week. I am so proud of the way they handle themselves when I can't be there, and thankful for our family who takes good care of them while we are away. 

Today was day five off meds and after three consecutive nights of sleep deprivation, still we wait for seizures. At this point, unless Seth has multiple seizures very quickly, we will not be able to move forward with the second surgery on Tuesday. If that is the case, surgery would tentatively be rescheduled for the following week and we would continue with nightly sleep deprivation to attempt to induce seizure activity. Please pray that Seth's brain cooperates and seizures come soon. Not only are we all feeling physically and emotionally tired, but Tony and I want to get home to our other children as soon as possible as well.

While I do feel a little bit discouraged that things aren't moving exactly according to plan, I try to keep my eye on the long term outcome, not just the here and now. As Seth's neurosurgeon said this morning, we haven't come this far to stop before we complete the marathon. We may have to walk the last ten miles, but we're going to finish.  

Seizure Watch Continues

I want to thank you for all of the prayers, good thoughts and words of encouragement we have received. There are so many praying for Seth and it truly buoys our spirits to hear this. We are so grateful.

Seth's first night in the PICU was not very restful. He was nauseous and unable to keep fluids and pain meds down and was feeling a lot of discomfort. His left eye had swollen shut during the night due to the surgery, and since Seth already has low vision in his right eye, he was not able to see and was very frustrated by this. By late morning yesterday, he was given an IV pain med and anti nausea med, which had a sedative effect and caused him to sleep for much of the afternoon. Once Seth woke, he was able to start eating a bit and was able to keep down oral pain meds. He was moved to his regular room on the neuro floor and we started to gradually see that he was beginning to feel a little better.

As of yet, Seth has not had any seizures. He continues to have frequent abnormal electrical discharges in his brain, which appear to the neurologist to be centered in the left frontal area. This is consistent with previous data they have collected, but they will need to see seizures in order to confirm. In order to try to induce seizure activity, Seth's neurologist had ordered sleep deprivation for last night. This typically means that we keep him awake until midnight and then he is awakened at 5am. Seth was very restless and unable to sleep after we had kept him awake, and was having some stomach discomfort last night. He would sleep for 15-30 minutes and then would awaken and had difficulty finding a comfortable position and getting back to sleep. Not only that, it seemed that the slightest movement would set off the alarm on one of his monitors. Finally by 3:30am, he was able to fall asleep and was allowed to sleep until 6am this morning.

Today he has been able to eat and his appetite is slowly returning. Seth is not complaining of pain and the swelling in his eye is going down, so he can see enough to watch TV and play games. He is permitted to take short naps, and as his electrical discharges are most active as he falls asleep, we are hopeful that this will induce seizure activity for further data collection.

The plan is to continue with sleep deprivation again tonight. Although tired, we are feeling hopeful and are grateful for the excellent care Seth is receiving. Our hope is that seizures come soon so that we can move forward to the next step.

Surgery Day

Today Seth had the first of his surgeries in an attempt to alleviate his seizures. We arrived at Children’s at 6:30am and began preparations for Seth’s 8:30am surgery for insertion of the grids. Seth was happy this morning, we even saw a little of his usual silliness, but somewhat nervous as well. Shortly after 8:30am we said goodbye, and Seth was taken back to surgery. We received our first update around 10:30am that everything was going according to plan, and received another update a couple hours later from his neurologist that they had successfully placed the grids and were getting ready to close. We spoke with Seth’s neurosurgeon after surgery was completed, and breathed a sigh of relief that the first step had gone well. After being in recovery, Seth was taken for a CT scan and we met up with him around 4pm when he arrived in the PICU. Seth will stay in the PICU for the next day or so for monitoring before he is moved to the neuro unit.

Seth has 102 leads connected to his brain and skull, both internally and externally, to monitor his brain activity. We continue to see almost constant spikes in brain activity as he goes to sleep and while he is sleeping, but he has not had any seizures yet. He is quite uncomfortable this evening, as he has significant headache pain and is suffering from nausea due to the anesthesia. It is a helpless feeling when your child hurts and there is little you can do to make things better. I know he is comforted that his dad and I are here with him, so that is our purpose right now, just to provide what comfort we can. And once again, we wait…

Medication Reduction

Tonight we started tapering Seth's meds in preparation for surgery next week. He will be completely off one of his meds by the weekend, and will remain on his second med. If he goes through the weekend without any seizures, they may start tapering his second med on Monday. It is such a fine balance for them to taper so that he starts having seizures once he is in the hospital and after the grids are placed on Tuesday morning. As a parent, this is an anxious time and we are hypervigilant in monitoring Seth.

Tonight we also celebrated Seth's 10th birthday, which is still a few days away. We wanted to celebrate while he is still feeling good and able to participate with less risk of seizures to interrupt. Plus we wanted him to have time to play with his new toys and build his Lego sets before heading to the hospital. He was one surprised and very happy boy.

Happy birthday sweet boy! Hoping your 10th year is the best ever!

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.