I don’t remember the date I signed the “Do Not Resuscitate” (DNR) orders for Tiara, I just remember knowing she was dying and if her heart decided to stop, I should let her go. I kept voicing my concerns to her doctors about her deteriorating condition and one of the fellows finally said to me, “you may want to sign DNR papers for, because if her heart stops they will probably break her ribs trying to restart it.” She then went on to describe how horrible the whole process was and that if her ribs broke, a lung may get punctured, etc. The doctor assured me that it was the most compassionate thing to do for a patient in Tiara’s medical condition. As I am reflecting about this right now, it seems so strange to me that she was once so sick. I will never forgot it, yet is seems so unreal that I signed a DNR order for my child.
I remember thinking, “she is on a ventilator, being feed through her veins, has squeezey things on her legs to prevent her from getting blood clots, may be blind, could be in a wheelchair on a ventilator for the rest of her life, is on more than 18 different drugs, is full of infections and yet her heart is still strong. If she has had enough, the only way for her to pass peacefully would be for her heart to stop. At the time, I knew it was the right decision for her and oddly enough several nurses thanked me for signing the orders. They said it was heartbreaking to watch but knowing that she had a way out, comforted them. They told me most parents couldn’t bring themselves to sign the papers and many times regretted it later.
Once the orders were signed, I started obsessing on getting a priest to perform her last rites but I couldn’t bring myself to ask the nurse to call the priest. They had already offered to call a priest whenever we needed one but I was terrified to ask them. It was like her whole life was hinging on whether or not the priest came. A completely irrational and silly thought process but I couldn’t help it. I finally just admitted to Louie that I couldn’t ask the nurse myself, so could he do this one thing for me. So of course he spoke to the nurse and arranged for the priest to come that afternoon. The priest arrived and took one look at Tiara and broke into tears. I was so shocked. Why was he crying? He was supposed to be comforting us, not making it worse. He performed the anointing of the sick prayers for Tiara and finally I felt safe. If anything happened to her she would be Ok, because as the priest explained to me, since she was a child she was going straight to heaven.
At some point in this nightmare, we decided to give Tiara her Ipod. Of course music was her favorite thing in the whole world, but her Ipod was filled with wild, loud songs from Hannah Montana to John Mellencamp. Lou and I were scared to play that kind of music for her, but thought it might help. We were both standing next to her bed as we put the headphones in her ears. I was watching the monitors to make sure her ICP numbers didn’t increase when all of the sudden her heart rate really increased. I got really nervous and took the ear buds out really quick. And then she got pissed! Her blood pressure spiked and she actually lifted her hand. At first I thought it was spiking because she didn’t like the music, but then we both realized she wanted her music back. Lou quickly put the ear buds back in her ears and she instantly calmed and her blood pressure returned to normal. From that point on we kept an Ipod playing for her 24 hours a day. My sister bought her another one and had Tabitha program it, so once one Ipod died, we could put in the other one.
At this point she has been in the ICU for 40 days and even though she is no longer in a medically induced coma, she hasn’t woken up. The doctors weren’t sure why she wasn’t waking up, and neither did I. They kept saying she needed more time to wake up, but she was still having tons of seizures on the EEG, so I could tell they weren’t convinced she would ever wake up to be anything like her prior self. I know many of them thought she was going to wake up and being severely mentally retarded. I didn’t know what to think, I just knew we had to do something about the seizures.
They decided to start her on the Ketogenic diet because they didn’t know what else to do. Because she is allergic to dairy, they were going to make a soy based Ketogenic diet that would be given to her through her G-tube. She had just gotten a g-tube so she could get food straight into her stomach instead of through her veins. On almost the same day, they started the Ketogenic diet, I was talking to my favorite neurology nurse practitioner who visited us everyday and was always helping me brainstorm things that might help Tiara. Yes, I know I am not a doctor, but I never stopped researching and thinking about how to help her, while living in that hospital. While talking to her it suddenly dawned on me, “What about Depakote?” Depakote was Tiara’s base seizure medication for years and she had to be weaned off of it for the surgery because of blood clotting issues, but the last surgery was 4 weeks ago. She looked at me with wide eyes and said, ” Oh, my gosh, the team may still be downstairs, I am going to go ask them right now.”
Apparently she went down to the team and presented them with the option and they all looked at each other. Her neurosurgeon spoke up first and said it was fine with him, it was safe now, and then all the neurologists said, YES. They literally jumped on it and ordered the medication right away and came up with a dosing. Within days of starting the Ketogenic diet and the Depakote, she opened her eyes and smiled!
I know it was the Depakote, but the nutritionist and doctors tended to believe it was the diet. I didn’t matter why, I just knew the minute I saw her smile, she was going to make it. The nurse ran in and said “can she see?” I don’t know? We took one of the big pictures my sister had blown up of all the family and asked her to point to different people. SHE WAS ABLE TO DO IT! SHE COULD SEE!!!! It was beyond a miracle. The news spread fast and before I knew it her neurosurgeon came bolting into the room. She had been dosing off and suddenly woke up and smiled at him. He had tears in his eyes, threw both his arms in the air like he just won a marathon and shouted “hallelujah!” He hugged me and was beyond jubilant. That poor man had lost so much sleep over Tiara. He really cared so much and you could see every time he visited her, it was tearing him apart that she wasn’t getting better. He visited absolutely everyday, and even though his part was over, the surgery, he never stopped coming to see her until she the day she left the hospital.
Now that we knew she was going to survive, we had to switch from survival mode to getting better mode. Of course she was still having seizures and wasn’t awake much each day, but she tried to start talking. Because she now had a trach, she couldn’t really talk because there was a hole in her throat and the vibrations are lost unless you cap the hole. So freaky and scary to deal with. As soon as she appeared to be waking up more and more each day they started to wean her off the ventilator. That was a really scary process because during the weaning and the new trach, she had several episodes where her oxygen dropped off because she had a mucous plug. I had to suction it out and a few times I had to give her blow by oxygen while waiting for the nurse to show up. I still can’t believe I used to do that, it still scares me to death thinking about it.
The team started her on physical, occupational and speech therapy because now she had to relearn everything. Like a baby, she wasn’t even strong enough to hold her head up. She had lost over 30 pounds and was so weak, she couldn’t sit up without support. Nevertheless, I could tell she would someday walk, talk and be her sassy self again!
Read the final Week of My Journey With Tiara Here
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