Well it looks as though there will be no G tube surgery. We are at the Alberta Children's hospital. The Docs say that they believe Anaya is too weak to undergo the procedure. They say it's likely that if they breathe for her during the surgery they will have to use the machine to breathe for her for the rest of her life. They say her body will forget how to breathe. Then she would be in the ICU until she died.
So we are not going to do it. I think dying in the ICU would suck. Home would be much better. Hopefully that is still a ways away.
The docs are convinced the next stage of the disease will be seizures. They've been teaching me how to recognize a seizure and what to do. I find the thought of watching Anaya struggle with seizures extremely upsetting. I pray with all my heart that she will be spared that.
We talked about end of life care and medicines to make her comfortable. Apparently morphine is good for that. They say you can suffocate to death comfortably while high on morphine. Who knew. It decreases the awareness of respiratory distress.
Quite a dark day. I can't wait to go home.