This past week has been a difficult one. Saturday morning we were doing last-minute Christmas shopping at Target when Nami started having a seizure. Over the past week he had been seizing 50+ times a day, but this one was different…it was not going to stop on its own. From past experience I knew not to hesitate and took Nami right out to the car and gave him his rescue medicine. It did not stop the seizure. I calmly got my two boys secured in their car seats and headed to the hospital. Salesi was at work and can only use his phone on breaks. I started making phone calls to my family members to find someone to meet me at the ER: first the home phone…no answer, mom’s cell phone…no answer, my sister’s cell phone…no answer. Now I was getting ANXIOUS. I kept checking to make sure Nami was breathing while continuing to make phone calls (which I do not do while driving under normal circumstances). I feared I was going to get in a wreck and considered dialing 911. Finally I got my sister, Lauren, on the line who lives 45 minutes away. I frantically cried, “I’M GOING TO THE ER AND NO ONE IS ANSWERING THEIR PHONE! PLEASE CALL SOMEONE TO COME MEET ME BECAUSE I HAVE KOPE WITH ME!” When I hung up with her, my sister Meridith called and said she was on her way to meet me. My mom also came to my rescue as soon as she found out.
I struggled to carry Nami’s dead weight and keep Kope nearby as we went into the ER. We went straight in (I didn’t delay or second-guess my decision this time). The ER staff got an IV in Nami (it only took 4 pokes this time). We implemented the action plan we had made with his neurologist in order to try and avoid lifeflight which was to give Nami Fosphenytoin and Propofol. He seemed to react positively to the meds. Meridith took Kope home and my mom stayed with me. After monitoring Nami for a couple hours, we decided with the ER doctor that it was probably safe to take him home. We got in the car and after a few minutes of driving Nami started to wake up. He woke up seizing. My goal was to just get him to my parents’ home and see if he would stop. His coloring was good and his airway seemed fine. We got to my parents’ and just watched him seize. For hours we watched him. I kept asking myself, “Is this okay? Do we need to go back to the hospital? I know we can’t give him any more meds at home, so what do we do? I can’t just watch him seize all night!” I was exhausted from this highly stressful day. We went back and forth on what to do, we consulted his neurologist and eventually Nami started vomiting. I lost it and shouted, “We’re going to the hospital right now!” As instructed by the neurologist, we drove to the children’s hospital which is about an hour away. Nami was admitted and given more meds. The continuous seizing finally stopped. Now the crankiness would begin. After such severe seizing and so much medication, Nami gets very loud and violent. He becomes inconsolable.
We were released from the hospital the next day and for four days, Nami continued to struggle. He felt funky. He wanted to walk but he didn’t have the strength or balance to. He could barely get his body to a sitting position. I watched as he tried to crawl but his arms couldn’t hold his body up and he fell flat on his face. He then tried to army crawl and still his head flopped forward. He relented and laid down. He was too tired to move. I sobbed. I watched him try this over and over for days. Nami wailed almost nonstop. He needed 24 hour surveillance. I cried a lot. I was exhausted. I wanted to fix my son. Viliami’s seizures continued (about 20-100/day) but the past two days have been much better as far as his balance goes. He’s started to smile again. There were moments during these last few days that I just watched Nami as he lay sleeping. I recalled a journal entry I wrote a couple months ago:
October 24, 2012
Last night was an awful night which led to an awful day today. Since Viliami was released from the hospital two weeks ago, his seizures have gotten worse and worse. He was having 20+ seizures a day, each of which started with him stopping breathing for a few seconds. By Monday, he was probably in a seizure 1/3 of the day. He couldn’t walk, he couldn’t play. He couldn’t do anything but rock on the couch, then seize, then rock some more. I finally gave him rescue medicine, after finally speaking with neurology after leaving them 3 messages and my dad calling and talking directly with a neurologist. Nami only had 5 seizures that I noticed yesterday and about the same today. I gave him the rescue medicine again today, hoping that his brain would “restart” as the neurologist said it needed to do.
Last night I felt obsessive about checking on Nami for some reason. One of the times I went in, I just watched him sleep and started to cry. Realizations of the disease come at any time, in any place, and last night was one of those times. While he was sleeping he looked like a normally functioning child. He was not suffering from seizures, he was not incapable of talking or comprehending things. I cried because I knew that wasn’t his reality and tomorrow would be another difficult day.
... I feel like I’m in shock, I’m not quite in my body. Maybe that’s my way of coping with everything. Nami was extremely cranky today. He screamed a lot and then I just cried again, remembering how he looked when he was sleeping last night. We can’t ever just get up and go anywhere. We can’t just go to a park or go swimming. It is such a weight. Others don’t realize the weight that is when you have a disabled child.
The feelings expressed in this entry came rushing back to me this week. While I watched Nami sleep, I was ready for him to wake up and have a conversation with me, play catch, or tease his brother. I was ready for him to wake up and feel at peace. In that moment I felt a rush of sadness for these moments that may never be.
Nami is not at peace when he is awake. But, the constant struggle makes us recognize and celebrate EVERY little accomplishment he makes. We rejoice when he says a new word, figures out a new toy, or recognizes social clues (i.e. giving me a blanket when I was sad…well throwing at me, but at least he tried). Although we had a difficult week, we celebrated in the joy we have as a family. We have a deep gratitude for family and friends who are constantly helping us out. We had so much fun watching Nami and Kope enjoy the toys they received for Christmas. We are very grateful to the SECRET SANTA who left loads of toys for our kids on our doorstep. If you are reading this, we are so grateful for your generosity! It really lifted our spirits during a difficult time.
Spending so much time with my family during the holidays allowed them to gain a greater understanding of what our little family’s daily life is like. They have heard me explain what things are like and are always supportive, but because of the long hours spent together, this time they were able to SEE the challenges Nami has after these kinds of episodes. As my family members were the ones making comments about him being uncontrollable and inconsolable, I felt like their empathy for us grew. My sister Lauren sat with us in the ER at the children’s hospital and saw firsthand how physically and emotionally challenging these experiences are for us. She saw Nami kicking, screaming, and yanking on IVs and monitors. He threw books, tried to knock the paintings off the wall, and cried as he was held down in order to keep him from hurting himself or jumping out of the bed and running away. There were moments that his body would go limp and he would look straight at one of us and sadly say, “All done”. He wanted this to stop. At one point I looked at my sister, slumped way down in her chair with her hand rubbing her temple and taking deep breaths. I said, “Are you okay? Are you getting sick? Do you need to go?” She replied, “No. I’m fine. I just can’t believe that this is what you go through. It’s one thing to hear you tell me about it and another to be here. I am so sorry that you have to do this.” I was sad that my family had to share these burdens with me, but grateful at the same time because I feel like in the future they will better understand when I tell them what’s going on.