So many questions, so little time...

Starting out with my brother Steve's condition... He continues to deteriorate. The only command he can follow is an occasional movement of his left arm and opening his eyes to his name. He follows you around the room with his eyes and appears to understand what is going on. His EEG is normal and shows no brain damage or seizure activity. They feel he is a mind trapped in a body unable to communicate. Regarding rehab, he is no longer a candidate as he cannot follow a command - meaning he can not rehabilitate. They told us that even if he went to a rehab, it would take a miracle for him to even say his name or willfully move his body again. He has a feeding tube in for nutrition, as well as IV's to manage his cardiac issues. He also has two blood clots, which they are unable to treat as it could cause a bleed to the brain. They did take him to surgery on Monday morning to put in a larger shunt to drain the fluid from his brain. They successfully completed that. Last night he went into respiratory distress and is now on oxygen. He is also being treated for pneumonia. We met with many physicians regarding his living will and his wishes. It has been decided that if he does not become more alert or improve in the next week, we will need to follow his wishes and turn off his feedings. Unfortunately, none of his family members are happy with this option. We feel it's in God's hands and hope that it doesn't come to that. We are planning to transfer him to hospice next week if need be.

Unfortunately after what has transpired in the past two weeks, I am questioning the urgency of my brainstem surgery. As confident as I was, I have seen just how dangerous this area (the brainstem) is. I wouldn't wish this upon anyone, let alone myself. My internist feels the neurosurgeon at Northwestern is highly respected in the field and MD Anderson may be no better - that the risk is so high of having even temporary damage. My internist and neurosurgeon here feel that I should opt to drain the cyst, rather than remove that and the tumors. This could buy me some time, but it's likely the cyst will refill & they cannot predict how long that will take. It's really not treating the problem. I thought I was 100% confident in MD Anderson's plan, yet the more I read and the more doctors I talk to, the more questions I have. I need to be sure I'm making the right decision. I also know that I don't have a lot of time & risk complications the longer I delay treatment...

I know many of you are thinking of me and have been calling. I want you to know how much I appreciate your concern. I'm just so overwhelmed right now that I'm not able to speak to everyone personally. I need to use this blog as my primary means of communication right now. I hope you understand. Please keep your thoughts and prayers coming & I will continue to update this blog as things change. Love, Kim