Every morning brings the doctors rounds and new bits of information. Neurology came and the news was not good. I was compelled to ask questions. I had read enough online to know that the news would not be good. I guess I just needed to hear it for myself from a doctor. I was told that he had only a 1-3% chance of survival. He appeared to be headed toward being declared to be in a constant vegetative state. I was trying to prepare myself for this but you can never be prepared. Only his brain stem was alive. The signs that he was waking up were involuntary reactions, even opening his eyes. Someone in a constant vegetative state seems to look through you instead of at you. It looked like the rest of his brain no longer functioned. This is one step above brain death. Only involuntary functions are present. The respiratory therapists had been telling us that he's breathing some on his own and there's hope of getting him off of the ventilator.
Hearing this while being alone with Clayton who was still constantly convulsing from the jerking, was the worst experience of my life. I had just received devastating news and wanted to be with Clayton. But, just holding his hand was so difficult. The physical feeling of his convulsions paired with the internal feeling of pain was more than I could bare. I just wanted to crawl out of my skin because it was so distressing. The doctors and nurses told us that it was more painful for us to watch than for him to feel. I comforted myself with the belief that with unconsciousness comes the ability to temporary "leave" your body to take a break.
I didn't know what to do with this knowledge. Mom and Dad knew we needed a miracle and that things weren't good. They know that he could be in a vegetative state because he wasn't waking up. But somehow, this news seemed worse. I kept calling them to see when they were coming. I didn't want to alarm them and I didn't know if I should tell them or wait for the doctors. I called Stacy and she decided to come to the hospital for support with all 3 babies and Andrea.
Aunt Maria and Uncle Pete came and brought lunch. They gave me a break. While I was out the group of doctors for the floor came to do their rounds. The news was everything that we had feared. It was time to discuss what should happen next and the team was encouraging shutting off life support. I remember hearing a doctor say, "this is disturbing to watch," when referring to his constant convulsions. The team decided to put more medications back on board that had a sedative nature. These were decreased or removed to assist with waking him up. The goal was to keep the convulsions at bay while using as little sedation as possible to allow him to wake. The team wanted to bring up neurology to discuss everything with my parents.
When my parents finally did arrive, I had decided that I needed to tell them what was coming. I felt that I would want to hear it first from a loved one. My mom was starting to accept this. My dad was still ready to fight the good fight. None of us was willing to give up. My aunt and uncle gave their support to the best of their abilities. They have done a lot of healing and accepting the death of their own son. They were able to offer a perspective of accepting a child's death. My parents weren't ready to hear this.
The three of us sat in the waiting room with Dr. Dan. He told them what I had already heard and then discussed the options. Clayton could live in a vegetative state indefinitely. The hospital encouraged terminating life support. We didn't want that because we knew that Clayton did not want that. We came up with the decision that we would continue to give him time to wake up. The doctor suggested coming up with a specific time frame for waiting. If no improvement was made after maybe 3 months, then life support could still be terminated. We wanted to continue to give him a chance to recover because people do wake up. Mom and I were especially concerned about his soul. Where is he, if he's not truly living in his body but not yet dead. We didn't want his soul stuck on earth when his life in many senses was over. It would be an torturous state to exist.
We did decided to implement a DNR (do not resuscitate). If he went into cardiac arrest, again, we would let him pass and not continue the suffering. In that event, we also wanted him to be an organ donor. We knew that Clayton really wanted to pay the gift that Greg had given him forward to someone else. While they might not be able to use his heart, kidneys or lungs, they could use eyes, skin and other organs that were not damaged. Someone from Gift of Life was on the floor that day and we were asked if we wanted to speak to them. We declined, it was too much, too fast, and all of his information was already downstairs in the transplant center.
We ended up speaking to the neurology team outside of his room. They explained that based on their statistics, testing and experience, Clayton would probably not recover from his brain injuries. They were very upfront and concise about what they knew and saw. They also explained that their are elements that they don't understand about recovery including why some people wake up after years of being in a vegetative state. There are still mysteries.
Mom, Dad and I all went home. We needed a break. I felt that Clayton was no longer with us because I felt his connection fading. I didn't know if he was exiting as a relief from his suffering or if he was ready to die. As time went on, I believed that he was ready to go to heaven and end his suffering. It was just entirely too much to ask him to stay, even for Max's sake. He was going through more pain and distress than anyone should. I kept thinking about the fact that if he were a pet or farm animal, my family would have "ended his misery." Because he was my brother, that was unthinkable. It made me wonder which was the right thing to do.
No surprisingly none of us slept much. Quite frankly, we hadn't slept much since he was hospitalized.
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