A Ticking Time Bomb I Am

My voice is hoarse, almost gone, my eyes are puffy and I am feeling on the edge of cracking into a million pieces. My frustrations are growing and my confidence in medical professionals is dwindling. We spent 4 hours at Gillianne's pre-op appt yesterday, of which, I almost walked out of twice and simply cancelled her surgery. I think part of me is looking for a reason to cancel, simply because my guilt for making this decision is consuming me.

I finally met an ARNP that listened to my concerns and helped me to formulate a plan of action. Gillianne cannot have the usual course of sedation because they usually start with oral versed, suspended in a strawberry sugar base. She was able to get everyone agree to allow me into the OR where they will use the gas mask to put her to sleep, then place her IV and start the general anesthesia.

She was also able to get us moved to the first surgery of the day due to Gilliane's issues with blood sugars and fasting. It took a lot of time explaining that I can't "just use clear fluid like apple juice" to maintain her sugars. I have this huge fear that someone will give her apple juice in recovery before I get to her. I almost want to write on her forehead with a sharpie.

It's been a long road here and a few days left and we have all the answers, at least I hope. Of course, there is also that fear that the biopsy comes back with normal enzyme assays which would put us back to looking for that needle in the haystack. I can't even deal with that right now but somewhere in the depths of my mind I know that fear lingers. Don't get me wrong, it would be great that have her normal but she isn't normal and if it isn't this than what else it could be would be even more disturbing.

I am so thankful for all the prayers and support from you all, my friends, my family. It's been a difficult time the past year and you have pulled me through many hard times.