Back to Reality... Sort Of

Seth was discharged on Thursday and we arrived home late afternoon. He is doing well, but continues to have swelling that we are watching and frequent headaches. He has also continued to experience nausea periodically, so this is affecting his appetite. We are hopeful that over the next couple days we will see marked improvement.

On Friday, we took Seth to pick up Ethan and Aiden from school, and stopped in briefly to visit his class. Our school family has been wonderfully supportive, and his classmates were so happy to see him. Seth felt like a superstar! His classmates had brought in gifts for Seth and he was so overwhelmed  by everything that has been done for him. As his mother, I feel the same way. We have been so blessed and supported by so many through this whole process. It truly does bring comfort and help relieve some of the stress of a difficult situation.

We are all continuing to adjust back into our "normal" life. Our oldest son has exhibited some anger since we've been home and our youngest has been exceedingly upbeat. Tony, Seth and I are still quite tired but have enjoyed a couple nights of better sleep. Seth has shown increased agitation and frustration in some instances and we will continue to help him to deal with these situations, as we all work on getting back to reality.

Surgery #2

Seth went back into surgery yesterday to have his grids removed and then spent the night in the PICU for monitoring. His recovery so far has been better than after the first surgery, with less nausea and pain. In fact, several hours after surgery he was sitting up in bed and playing with Legos.

Today he was moved back to the neuro floor, and as long as he keeps progressing, we expect him to be discharged before the weekend. He is having some swelling on the left side, but not as much as after the first surgery. Pain is being pretty well controlled with medication. Considering this kid has had two brain surgeries in two weeks, I am amazed at his perseverance and recovery. I think we have hit the point where we are all ready to be home, but that is motivation for Seth to continue to do what the doctors recommend so we can get there.

Not What We Had Hoped For

I have given some thought to the post I would write when Seth had a seizure and we could move forward with the surgical resection. I have imagined the collective cheer from all those who have followed our journey and prayed for us and thought about the relief we would feel. Sadly, I will not be writing that post. After 14 days, Seth has not had a seizure and we are unable to complete the resection at this time. 

After meeting with Seth's neurologist and neurosurgeon, we have made the extremely difficult decision to have the grids removed. Seth will go into surgery tomorrow to have the grids removed and should be ready for discharge later this week. While Seth is still tolerating the grids fairly well and we could potentially wait another week, the chances that he will have a seizure at this point are very low. We have agonized over this decision and have decided this is the right thing to do for Seth at this moment. While I am sad and so very disappointed, I know that we did everything possible to try to induce a seizure, things that have worked for Seth in the past. I don't understand why these methods didn't work this time, but I have to believe that it was just not the right time. For now, we will allow Seth to heal, grieve what we could not achieve and when the time is right, we will consider the options and whether a second try at surgery is in Seth's future. 

No News is Not Good News

And still we wait... It seems that everyone here is surprised Seth has still not had a seizure. His EEG continues to show lots of irritability, but nothing has developed fully into a seizure. We are going to try a couple more nights of sleep deprivation to see if that produces desired results, but with each passing minute without a seizure, hope fades a little more.

Seth has done amazingly well through all of this. He continues to be cooperative and has remained his usual easygoing self for the most part. He did start leaking some fluid yesterday, so we are keeping a close eye on this as this could become an infection risk. If the leakage continues, they may go in and drain off some of the fluid that has accumulated.

It has been hard to want something so badly for Seth and to be so close, but yet unable to get there. I suppose I have started grieving a bit for what might not be. Nothing has been lost on this attempt, as we can still come back and try again at another time, although none of us wants to have to do so. While I don't feel ready to throw in the towel quite yet, I know we are nearing the time when a decision will need to be made.

Will Today be the Day?

It's hard not to feel discouraged when you are waiting. Today is day 10 since Seth's meds were stopped and we continue to wait. The anxiety increases day by day as we continue waiting and hoping for something to happen so we can move forward. Seth is doing remarkably well, all things considered. We are trying different tactics to try to induce seizure activity and Seth has started working with the recreation therapist as well. The hope is if we create situations that may be somewhat stressful, such as stopping in the middle of a fun activity to complete a less desirable task, this may trigger a seizure. Honestly at this point, I think I would be willing to try almost anything. I can't describe how desperately I want to be able to offer this opportunity to Seth to cure his seizures and not have to go home without the second surgery. Although I don't understand the wait, I have to believe there is a reason, although one we may never know. Maybe today will be the day...

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!