August 24, 2011. The big day. You had your take down surgery. The surgery that we've all been waiting for. The day I thought we could put all the hard stuff behind us.
Here you are dressed in your hospital gown and pants. You were so happy, even though you were starving! I prayed that you would be comfortable without food and not miserable. And you were comfortable. You slept the whole way to Salt Lake and off and on through the afternoon. All in all, you went 12 hours without food before surgery. 
Here you are right before surgery. So hungry, so tired, but still not crying. You love your binkie and your little bean bag. We chose your surgeon before you were born from a recommendation from Aunt Linsey. His name is Dr. Downey and we think the world of him. We feel he is the best surgeon around and very careful with his work. I pray each and every day that your doctors and your surgeon will be guided to do what is best for you, in the appropriate time.
Surgery was almost 3 hours long. We got frequent updates and you were doing so well during. You did require a blood transfusion, which wasn't surprising. You are anemic and have little blood anyways. The surgery and the reconnection went wonderfully. They injected dye into your intestines and it went all the way down. No leaks! As they were getting ready to move you to the recovery room you were stable, awake and breathing over the ventilator. The dr. felt confident in pulling your vent but once they did, you stopped breathing. So they put it back in and sent you to the ICU. We had to wait a long time before we could see you. You were in so much pain and trying to cry out but couldn't because of the tube. The next day they turned your vent way down and for 2 hours you were breathing wonderfully on your own. They were thinking of extibating you later that day. Then you stopped breathing. Dad and I had just barely left the room to go and grab lunch. I heard them call a Code Blue, in your room, over the intercom and my heart almost stopped. I ran back to your room to see if filled with Doctors. Turns out it wasn't a huge emergency but it did scare me to death. I couldn't imagine losing you. They determined you are just in too much pain, and too tired to breathe on your own again. I hate seeing you like this but I keep praying your body will be able to rest enough to regain your strength so they can pull the vent. I feel horrible that you are in so much pain from the surgery. Seeing you for the first time after surgery made me regret your surgery. They think your body is reacting poorly because it is in a bit of shock. That surgery really shocked your system. Before that, you were home, happy, and healthy and pain free. Now you are in the ICU and in a lot of pain. I know this surgery was a necessary step in your life but I wish I could have taken the surgery for you. You are such a fighter though. Stay strong and keep fighting.
Love you,
Mom
