Many of you followed Tiara’s progress on Facebook after her brain surgery and never totally understood why she had surgery in the first place and how everything went so wrong. I recommend reading from week 1 of my journey with Tiara, but if that is too time consuming start at week 23 and keep following each Monday for the next few weeks and hopefully that will give you the complete picture of why we chose for our daughter to have brain surgery..
Tiara and I are still in the hospital and she is trying to recover from the flu. They have given some of her seizure medications through an IV so her seizures are not lasting as long. The next morning her regular neurologist came by to visit us and discuss last weeks hospital stay. I was so excited to discuss the results with her because we hadn’t had a chance to talk since Tiara had come down with the flu within days of being released from the last stay. I was waiting for her to give me this big game plan after reviewing the EEG recordings and yet she wasn’t saying much. Once again I was perplexed. I finally just asked her straight out. “Why doesn’t anyone have a plan for Tiara? What is our next step? I feel like you aren’t telling me something.” She looked at me and after beating around the bush a little and me redirecting her back to answer my question she said, “We have no medical options left. I have done everything I can for Tiara and there is nothing medically left for me to do! I am sorry.” Wow and that was it, there was nothing left?
This is what Lou had been telling me and I had been refusing to believe until her Doctor actually told me “this was it.” Tiara was violent, having 10 or more seizures a day, vomiting daily, losing weight and couldn’t go to school and the doctors had nothing left to offer us. This couldn’t be happening. After breaking this news to me she suggested we put Tiara on Keppra again. We had used it in the past and it caused Tiara’s behavior to be even worse, but Keppra was available in IV form and the doctor felt as if we needed to try it again. I was super nervous about trying it again but as she told me, we were out of options, so I consented. She also said she would talk to the neurosurgeon, Dr. Mathern and ask him to consider Tiara for brain surgery even though she hadn’t been a candidate in the past.
Luckily Lou had come back to the hospital to sit with us and I took a break and went downstairs to get some food. I wasn’t feeling that well but thought I was just hungry and exhausted. Well, I was wrong. Within minutes of finishing my meal I started feeling super sick. All of the sudden I found myself throwing up in Tiara’s hospital bathroom. Apparently that flu was super contagious and I was sick as a dog. I got a sheet and laid it on the floor of the bathroom and was alternating which end of my body to stick over the toilet. Lou called his Mom and asked her to come pick me up and drive me home. I was refusing to go home so he told the nurse on me and asked her to kick me out. I know, can you believe it? He knows how stubborn I am and couldn’t reason with me so he just went over my head. By the time his mom arrived and I had agreed to leave I had been vomiting and having diarrhea for hours. I had no idea how I was going to make it home in the car. The nurse gave me a benedryl and a diaper and said the benedryl really helps stop nausea. They use it on the kids undergoing chemotherapy all the time. I took the pill, put on the depends and started my slow shuffle to the parking garage. Of course there was LA traffic but I made it home without throwing up or messing up my diaper, THANK GOD!
By the time I got home it was already 8:00 at night. Tabitha was taking care of Trinity and they both looked horrified when I crawled into the house. Neither of them wanted the stomach flu and I looked like death. Tab put me in bed and told me not to get out of bed. In the middle of the night I was dying for a drink and crawled into the kitchen for coconut water. I was too weak to walk and must have been spiking a fever because I was shaking and had the chills. I crawled to the front bathroom and remember sleeping on the cold floor for a few hours. I forced myself to keep drinking the coconut water because I knew it would get me better because it is so hydrating. I finally made it back to my bed and woke up at 6am to a call from my mother in law. She had promised to drive me back to the hospital in the morning but apparently she had been up all night vomiting. I was panicking because I didn’t have a car, and I needed to get back to the hospital to check on Tiara. Of course she was with Lou, so she was fine, but in my mind, if I wasn’t there, she wasn’t going to be fine. I called my Dad and asked him to drive me to UCLA before he left for work. Luckily he didn’t have court until later that morning so he was able to take up there. I had stopped throwing up, my fever was gone and I was super weak, but was in super mommy mode and needed to get back to Tiara.
Once I got there, Lou had to leave and go home and get ready for work. I noticed that Tiara was feeling so much better and her seizures were OK, but she seemed very anxious and moody. She kept crying and I was already wondering if the Keppra was causing this or was it something else? That day they released her to go home at 5:00pm. It was a Friday, Hello, traffic on the 405 South from LA to Orange County. I didn’t care, nor did I have a choice because we were both super weak and exhausted and had to get home. My mother in law offered to get a ride back to UCLA and help us on the drive home but I thought that was silly, I can drive my own kid home, no problem. Well, if I would have known what was going to happen I would have accepted the help.
Once we got in the car, she started crying and yelling and her mood was crazy. She didn’t even seem like herself. Once we finally made it to the carpool lane on the 405 Freeway, she kept leaning over and choking me. I was freaking out and trying to act like I wasn’t panicking but I was scared out of my mind. The traffic was so horrible I couldn’t decide if I should try and get off the freeway and call for help or just try and sing my way out of it. I decided to start singing all her favorite songs to calm her down. I sang and sang at the top of my lungs while driving in stopped traffic. I remember she was really loving Silent Night and the Star Spangled Banner, but every time I would take a break from the singing, she would start throwing things at me or grab my neck. That was one of the first times I was really scared of my own child and what she might do to me. I just kept singing and singing until we made it home. Once we got homes things weren’t much better. By the next morning I was convinced she was going to murder me and I knew it was the Keppra. I called the on-call neurologist at UCLA and it happened to be the resident that had treated us the past week. She wasn’t my biggest fan, but she knew Tiara and her huge med list and agreed to switch the Keppra for a similar medicine that had the same properties but was more expensive and sometimes difficult to obtain. Who cares, just give it to me. Of course, I had to slowly wean her off the Keppra, but forget that, I did it faster than you are supposed to because I feared for my life. Within a week, she was on the new medication, Vimpat, and her mood was returning to her normal mean self but not psychotic. I can do mean, violent and angry but not psychotic.
Next step meet with the neurosurgeon and pray he agrees to do brain surgery on Tiara.