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.
I've sat here for over 5 minutes trying to think of what I could say.
ReplyDeleteThe only thing I want to say to you can only be done with my arms in a big hug....
Let's try to get together next week for tea and muffins or something....
My heart goes out to you...
ReplyDeleteAnnick
Have a safe journey home where the sun can warm your faces and you can watch your gardens grow and Anaya can breathe fresh air and be surrounded by love and community. Hospitals are bleak places...they can not help but be bleak despite good intentions.
ReplyDeleteCamara:
ReplyDeleteLove Anaya as you have been. Love yourself as you should be. Enjoy your moments together and never ever forget how amazing it is to be a mother and to share that gift with Anaya.
Love, love, love to you.
-Danielle.
Oh Camara...there are no words... So painful to hear what you are going through. I'm on my knees... Love you
ReplyDelete