Surgery was scheduled for April 28, 2011 and somehow we were able to wean her off the Depakote and complete all the necessary physicals and blood tests in order to actually get the surgery. The morning of the surgery we woke up at at 3:00am because we had to be at UCLA by 5:00am. We loaded Tiara into the car in her pajamas but as soon as she was awake she couldn’t fall back asleep. I think she could sense our nervous energy and knew something big was about to happen. I had been telling her we were going to the doctors for a surgery on her brain, but she kept saying “picture, picture, brain, brain?” I kept trying to explain the surgery but she kept thinking she was going for an MRI, so I finally gave up and let her believe what she wanted. Once we got to the hospital she was dancing in the halls with her ipod and headphones, loving the fact that her voice was echoing so loud. I am not sure everyone else waiting to get checked in for their own surgeries were quite as happy about the singing, but I didn’t care. I pretended not to notice their irritation.
Once we got upstairs to the pre-op area TT was getting tired and we both had to change. One of us got to walk with her into the surgery room and of course I wanted to be the one to do it. So I had to put on this white scrubs outfit over my clothes with a hat. TT thought it was kinda funny, and I was trying to make light of it but I was starting to get really nervous.
After about 2 hours upon arriving at UCLA Tiara was pushed on a gurney through the halls into the surgery room. The anesthesiologist walked us to the room and introduced me to her partner who would be assisting her because the surgery was so long there would be a whole team working on her in case people needed a break. Wow, I hadn’t even thought about how the doctors would get nourishment or go to the bathroom. Once I kissed her good-bye, I walked out to the benches to meet Louie and wait to hear from the doctor. They anticipated the surgery would last 8 hours but told us they would be calling us with updates on my cell phone and we could also page the head the nurse to give us updates.
After 3 hours her neurologist found us outside on the benches and gave us an update. Apparently the first step in the brain surgery is to place electrodes directly on the brain to verify the areas they planned to take out. As they did this they all agreed on 3 areas in the left frontal lobe which they had initially decided would be good tumors to remove. As the technician was about to remove the electrodes the screen started lighting up that she was having another seize but this seizure was coming from a different tumor on the left that they hadn’t even realized was causing problems. Because it was fairly close to the other tumors they decided to take all four. When she told us the news, Louie and I were both thrilled. Four tumors, instead of three gone? What could be better? I thought the more the better to help stop the seizures. All day, I just kept praying please let her wake up, not be violent and have that throw up seizure be gone. I didn’t dare hope for seizure free because I knew it was a ridiculous to ever think the seizures could ever stop but our family needed the violence to stop.
Once we hit the 7 hour mark and we hadn’t heard anything more from the operating room, Lou and I started to get a little anxious. We called the nurse and she said everything was fine but because they were taking the extra tumor she expected the surgery to go longer, maybe 9 hours. And so we waited. Finally her neurosurgeon appeared after 12 hours and said they were done and she was safe and doing well. He gave us each a big hug and a picture of her brain. He showed us the areas he removed, and then said his resident was closing her up. Ugh, that made me nervous, but he told me this particular resident did it all the time and it was safe. OK. He said she should be up to recovery in a while and they would come get us. Well an 1 1/2 later they still hadn’t called us and I was really stressing. Finally after 14 hours they called me to come up to recovery to see our little angel sleeping with red bandages on her arm. They let her pick the color before surgery and we were shocked when she picked red since purple was her favorite color at the time. As soon they told me I could go see her, Lou went home for the night because only one of us could go in the recovery room with her.
She was still asleep when I first saw and the nurse was kinda complaining that she seemed too sedated even though she had been under anesthesia for 13 hours. Suddenly she started to wake up really grumpy, which is totally normal for her after being put to sleep. I leaned down to say Hi and whisper to her when she suddenly swung at my face and tried to grab my hair. My whole world collapsed at that moment and I did everything in my power not to instantly break down sobbing. I had just been telling the nurse Tiara’s medical history and how my true hope was that she would wake up without the violence. After she grabbed for my face, the nurse looked at me with pity in her eyes. I was devastated and suddenly scared because she started pulling at her bandages and the line in her arm. Here we go again, I thought. The nurse immediately called the doctor asked for an order to give her some sedation for her own safety. Normally they like to see the patient wake up and make sure they are Ok before they start giving them sedating medications but in this case it was necessary.
They finally moved us from recovery to her room in the ICU for night. Everything seemed fine that night except her face started to really swell. In the morning when the neurosurgery team stopped by before 7am they seemed a little concerned about the excessive swelling but otherwise she seemed to be recovering fine.
The nurse kept asking me when she normally wakes up because she was still sleeping. I thought the sedating drugs were keeping her asleep so I wasn’t super worried until about 11am when she still wasn’t awake and the ICU team started to get a little anxious. I figured she would be exhausted from major surgery but they seemed to think she should be waking up. I was staring at her monitors all day when I started to notice her Internal Cranial Pressure (ICP) kept creeping up. The nurse seemed really stressed about her condition and paged her neurosurgeon. When the neurology team stopped by at 2:45pm they kept staring at the monitors and seemed concerned when the nurse suddenly came in and said Tiara needed to be rushed down for a CT scan per her neurosurgeon’s orders. Transport was there in minutes and they rushed us out of the room while the neurology team was still standing there watching.
The scan went super fast and by the time they wheeled us back to the ICU her neurosurgeon was waiting for us. He quickly said he needed our consent to put a drain into Tiara’s brain to help relieve the pressure as it was dangerously high and she was at risk of suffering brain damage. He also needed to put her back on a ventilator immediately. We consented and as resident neurosurgeon started to prepare Tiara for the drain her main surgeon lead us out into the hall to discuss what was going on.
He explained that this had only ever happened to him one other time before with a young boy. He told us that the structure of Tiara’s brain, they called it the actual ‘BOX’ that your brain resides in was smaller than most normal “boxes” and it couldn’t accommodate the swelling which was a normal part of the healing process. In addition she was an excessive sweller, which he couldn’t have anticipated and when her sodium suddenly dropped it caused the brain to swell more and the seizures to start which rushes more blood to the brain, causing more problems. His plan was to immediately put in the drain and hopefully the ICP numbers would drop. If they didn’t drop by the morning he would then put her into a drug induced coma to calm the brain even further and if that didn’t work his final effort would be another brain surgery to remove the skull and release the pressure on the brain. He was hopeful option one would work and worse case scenario in his opinion was option 2.
She didn’t get much better over Friday night and by Saturday morning the ICP numbers were really creeping back up and he said she had to be put in a coma. At this point she was back on EEG monitoring and you could see that even though she wasn’t moving and she was in a coma her brain was constantly seizing. He discussed with us that he had to draw a line in the sand and he couldn’t just let the numbers keep going up without doing something more. He said if her ICP number which is supposed to be under 10 went to 30 again he would have to take her back into surgery. The first surgery was Thursday and on Saturday afternoon and I watched the number hit 30. I felt panicked. I called everyone in my family and told them to rush to the hospital because they were talking her back into surgery and I just didn’t know if she would make it through another surgery. Trinity was at a birthday at Color Me Mine and I called my sister and told her to hurry. She tried to calmly take Trinity from the party 45 minutes early without terrifying Trinity or causing a scene and she speed up the 405. I kept calling her and to tell her to hurry because Tiara was getting wheeled into the Operating Room any minute. My sister and Trinity came running down the hall just as Tiara was being wheeled out of her room. Trinity was so confused and wasn’t sure why it was so important to get there to see Tiara before the surgery. I told Trinity “kiss her toe and say “I love you.” Whatever Mom. She did it and they took Tiara away and this time they didn’t let me go with her. We all just stood there wondering if we would ever see her alive again.