GET ME OFF THIS ROLLERCOASTER!

It was 11:00 pm on Friday night. I sat there staring blankly at my computer screen. I had 51 new email messages. My eyes quickly spotted one from Nami’s epileptologist. I couldn’t bring myself to open it. I went through every single other new message and took care of them. Now I only had one left. I was scared of what the message would say. I’m not sure why, but I just had an unsettling feeling. I couldn’t ignore it any longer. I had to open it…

For the past few months we have been planning for brain surgery for Nami. His seizures are so bad that his neurologist suggested surgery as an option to explore. I still remember the night that Salesi and I decided that if the doctors deemed surgery a good option for Nami, we would do it. I made up my mind to be strong and stick with that decision because that is what we had felt was the right thing to do. After that, my nerves drove me to question our decision multiple times. Each time I questioned it, Nami would stop breathing and go into a seizure within seconds of my doubt. A few weeks ago, we started Nami back on an anti-epileptic medicine we had previously weaned him off of. Since then, his seizures have declined. Some days he was only having a few absence seizures. I would think, “This isn’t so bad. At least he’s not having trouble breathing.” He would then start to seize. One day, I was questioning our decision for surgery because Nami was having a good day. His scary seizure didn’t follow my doubt like it had the other times. Then I really questioned the decision for surgery all day. Later that afternoon, I ran downstairs to grab something. Nami followed me, I’m guessing because he felt a seizure coming on, and down the stairs he fell. I screamed in horror as Nami continued to seize for 2 minutes in my arms at the bottom of the stairs. I relented and cried out to God, “I get it! I won’t question the surgery again!”

I kept this promise until Nami got a MEG test, his final pre-surgery test. On Thursday we were up at 5:45 am in order to get Nami his medicine before heading up to the neuroscience clinic for the test. Nami was fasting because this would be a sedated test. For anyone who knows Nami, fasting is not one of his strong points, and this always leads to a difficult day. We made it up to the test and were told that the MEG machine was not working and that it was possible that they wouldn’t be able to do the test for another week or two. I thought, “How could this be? I trusted we were on the right path. I promised I wouldn’t question the surgery. Without this test we won’t be able to get the surgery done this year.” The doctor told me that we could go somewhere close by and she would call us if they got the machine working within the next couple hours. Otherwise we wouldn’t be able to do the test that day. I waited with my hungry son at my sister’s house for the call. When I didn’t receive a call for two hours, I thought the test was not going to happen. At 10:55 am, I finally received the call. I prepared myself to hear, “I’m sorry, but we are going to have to reschedule.” Instead I heard, “The machine is working if you’d like to come in and still get it done.” I replied, “Yes! We’ll be right over!” Success…the surgery was still possible for this year. Not only did we get through the 3 ½ hours sedation during the prep and testing, but the neurosurgeon’s office called and scheduled the pre-op appointment for the very next week. I had also received a message from the surgery coordinator the night before informing me that the surgery date was set and they were working with our insurance company to preauthorize it.

Everyone working to plan Nami’s surgery was hurrying things along because his seizures are so bad. Through each test, I kept hearing reassuring news that it looked like Nami was a great candidate for surgery and that we’d likely be able to get it done this year. I was always warned that nothing was guaranteed, so I took all good news in stride. I wouldn’t let myself believe the surgery would happen. Now with everything scheduled, I was finally able to let myself breath a sigh of relief. The surgery was set. Maybe our constant worry about Nami’s seizures would finally be relieved…even if only for a while.

Nami’s seizures got worse after the MEG test, and I felt so grateful the he was going to get this surgery, even if we would be spending the holidays in the hospital. Despite Nami’s seizures, Friday was a wonderful day. We spent an evening out with my boys, a nephew and three of my siblings. I don’t get out much so it was a blast to eat out and see beautiful Christmas lights.

We were exhausted, in a good way, when we got home. I got my boys to bed and there I was, checking my email. I tried to reassure myself that everything for the surgery was set and that this email was just to verify it. Instead the email said that all the doctors in the epilepsy surgery conference felt that it would be better to take more time and do more testing before the surgery. Nami’s doctor said he wanted to meet with me next week to give me a fuller picture of the situation. The happiness I had felt the past two days drained from my body and mind. Why did I have to be convinced that things were moving forward only to have it stripped away?

It seems like every few hours my emotions are yanked in a different direction. I can’t handle the ups and downs, the twists and turns. I just want to remain stable, but that is not my life right now. I have learned to be tentative about any good news. I keep telling myself that I am lacking faith when I don’t just believe that things will work out the way they are supposed to. After reading the email, I just cried and cried. I couldn’t stop the flow of tears. How could this be? I was so sure I had done everything right. I felt a panic attack coming on. I told myself, “Breath Annaka. Just Breath. You’re going to be alright.” After about an hour of struggling to breath, screaming into my pillow, crying uncontrollably and soaking through my pillow case, I finally felt a warmth wash over me. I knew everything was going to be okay. I didn’t know how. I just knew that it would. Maybe surgery is the right option. Maybe the timing is just not right. Or maybe we will take a different path completely. I have to trust that the doctors are helping us to make the right decision for our son. In spite of my tears, I was able to reply to Nami’s doctor with this email:

Hi Dr. _________,

That is very disappointing news, but I understand that everyone is doing their best to help us and that it is not a good idea to rush into something without conclusive evidence that it is the right thing to do. Nami is doing much better with the vigabatrin, but it's still not good. He stopped breathing for about 15 seconds yesterday on our way home from the MEG and continued a 2 minute, head-jerking seizure before he stopped. He had a few more seizures yesterday and today he's had about 5 seizures where he struggled to breath in addition to multiple absence seizures. He's still running into things all day and waking up multiple times most nights, but I don't know if that's due to seizures or not. It is difficult to not have an immediate solution to help him, but I realize I am not the only parent dealing with the stress of caring for a child with epilepsy.

Although things are better having added the vigabatrin back, I still don't trust that it's a long-term solution as he started having multiple seizures daily a year ago when he was on this med. I know that I am not the expert, though, and I appreciate everyone's advice. The best times for me to meet next week would be Wednesday or Friday morning. I am also happy to wait until after the holidays. I think this will take me some time to get over, even though I kept reminding myself to not get my hopes up. I might be in a better frame of mind to meet at a later date anyway, and therefore better able to understand what the next steps will be. I would love to know what your suggestions are for medicine at this time. Thanks again for all your efforts to help us.

Sincerely, Annaka Vimahi

I want off this emotional rollercoaster ride, but that is not the option. I have to learn to hold on and endure to the end.