I watched Tiara being wheeled away to the operating room for her second brain surgery in 2 days. Our whole family waited in the lounge which was empty except for a few others who also had family members going through emergency surgeries. It was Saturday night and everything was quite in the hospital. After 4 hours we finally received word from the operating room that Tiara had survived the surgery and would be brought back to her room in the Intensive Care Unit shortly.
Everyone left to go home and take care of their kids and I went back to her room to wait. I had no idea what to expect, I was just flooded with relief that she was still alive. Her neurosurgeon came and spoke to me and explained what he had done during the surgery. Apparently once he removed her skull her ICP (Inter-cranial pressure) numbers immediately dropped as the brain was no longer being crammed by her skull. He then removed the packing that was placed around the brain to protect it from the skull in the event of swelling after her initial surgery. Because her “box” is so tight, it couldn’t accommodate the extra packing, which in most patients is very helpful. He also saw that she had developed a bleed, but he took care of that and then just waited.
He kept taking her skull off and then putting it back on, while watching the ICP numbers. He said he tried it three times and waited longer each time to see if they would increase with the bone on and they didn’t. He said he thought he may have to leave her skull bone off and stitch her back up and let her brain heal without the bone. Ok, this sounded like such a nightmare because that meant she would have to go through another surgery months later to put her skull bone back in. UGh. Luckily, he decided it was safe enough to keep the bone in place and stitched her back up, so she wouldn’t have to undergo another surgery in a few months. Something good for once!
By the time she was back up to her room, it was 10:00 pm. The plan was to keep her calm by sedating her so her brain could heal. Every movement can cause a person’s ICP to go up. That is why they literally wanted her to remain as still as possible and move her as little as possible until she was more stabilized. I finally sat down on my pull out bed to rest for a moment when I noticed her ICP numbers were increasing again. I hadn’t slept in over 24 hours and I felt as my whole world had fallen apart and was just being put back together until I saw the monitor. I can’t even explain the terror, fear and absolute dread I felt as I watched the monitor. Within minutes the fellow (doctor above resident but below attending) came running in and said we had to put the EEG leads back on her head. Seizures cause more blood flow to the brain, which causes more fluid and swelling. I couldn’t believe they were going to unwrap her bandaged head that had been cut open twice in two days and start gluing leads on her skull. The thought made me feel sick to my stomach.
I sat watching as they all scurried around her constantly changing drips, giving meds, adjusting the trach settings, and finally they finished hooking up the EEG again and the data was bleak. She was having seizures almost constantly. At 2am, just when I thought I couldn’t take anymore bad news, the doctor came in and said neurosurgery wanted another CT scan immediately. ARE YOU F***ing kidding me? She just got out of surgery 4 hours ago and you want to wheel her down the hall and transport her to the CT scan machine and back to her gurney and back up to her room. I was really questioning their judgement at that moment. It really seemed too much and more dangerous than beneficial. She just needed time to heal and all this movement was only making things worse. I felt so frustrated!
The doctor said I could refuse the CT Scan and go against neurosurgery’s orders, but I didn’t feel confident enough to say NO. What if something else had suddenly appeared, what if I said no and she got worse, I couldn’t take that chance. I decided to listen to the doctors and walked next to Tiara’s gurney back down to the basement. I remember grabbing a blanket to put around my shoulders because I was shaking so bad. I didn’t know if I was cold or just shaking because my body couldn’t handle anymore stress. Every time she had a CT Scan I had to wait outside the door in the hallway. This time I was so exhausted and terrified I remember sitting on the disgusting hospital floor and not caring. I just sat there and cried, waiting for them to bring my baby back out. I tried to call Lou, because I really needed to talk to someone, but there was no service on my cell phone. So I sat there alone, wondering how I was going to find the strength to cope with everything that was happening. I prayed for strength for both of us.
By the time we got back to the room, I wasn’t much better and one of the doctors was worried about me and came and sat with me. We talked for a while and from that night on she came to visit me every night before bed to see how we were doing. After we came back from CT they realized they needed to calm her brain even further. They decided to sedate her deeper and put her in a medically induce coma. She stayed in the coma for several days until her ICP numbers stabilized and then they slowly started backing down on the medication to allow her body to wake up and see what would happen. Despite the fact that she was on super high levels of numerous anti-epileptic medications she was having tons of seizures. Too many to count each day. As she started to wake up, it was a nightmare. She opened her eyes and they just kept darting from side to side. I knew it was seizures. I remember the fellow on duty that night and I kept having her paged. She came in to the room and I told her “Tiara is not doing well, we need to sedate her more! She is having so many seizures, it isn’t safe.” She said “I’m sorry, but we need to let her wake up and I am not convinced those are all seizures.” I was frustrated and angry I just wanted to scream at her. I remember shaking my head from side to side and tears just started running down my face. I had no power to help. She wouldn’t listen to me and it was late in the night and she refused to call her attending physician. I really just hated her at that moment.
By morning everything had gotten worse, just as I knew it would be and the team decided to have Tiara undergo another CT Scan. I can’t remember the days from one to the next for the next 40 days as they all were pretty much the same. Tiara would be in a coma, they would slowly allow her to wake up, her ICP numbers would shoot back up and they would have to put her back into a coma. She would get a CT scan every other day for some reason or another. In addition to all this she started developing infections. Infections in her blood, breathing tube, staph, you name, she got it. Every 3rd day or so she would develop a fever and they would have to start swabbing, x-raying and taking samples of blood from all her open lines to find the source of infection. Staying in a ICU for an extended period of time is really dangerous merely because the patient is at high risk for secondary infections.
A few weeks into this catastrophe, her neurosurgeon told us that she had suffered at least 2 strokes from the swelling in the brain and it appeared she would be blind, if she ever woke up. He told me that he wasn’t sure if she would live and if she did it would take her months to recover and she would probably never be the same. That was the worst day of my life. I vowed to keep her alive but took back that promise a few weeks later when she seemed to be suffering so much.
Her face was pinched as if she was in pain and yet she was in a coma and constantly having seizures. She really seemed miserable and I just wasn’t sure if she wanted to be alive anymore and I wasn’t sure if it was fair for me to want her to be alive. I didn’t know what to pray for anymore, so I decided I would give her up to GOD and let him decide what was best.
I whispered into her ear. “Tiara, I love you and if you don’t want to be here anymore, it is OK, you can let go. I will fight for you if you want to stay alive but if this is too much, God will take care of you. I will find a way to OK, I don’t want you to suffer.” She squeezed my hand at that moment and her eyes fluttered. I thought it was a miracle and she was going to wake up, but she didn’t. I knew she had heard me. A few days later a priest came to perform her last rites. I told him how she had squeezed my hand and what I had said to her. He looked at me and said ” She was comforting you.”