How do you explain?

Well today has been a day of ups and downs.  Our biggest up of the day... NO MORE VENTILATOR!!! But with no more ventilator brings a whole new word to pain. At least we think it is pain. When we ask her if she hurts, has ouchies or is uncomfortable she says no. Yet she jerks and arches her back and gives the saddest little face I have ever seen. She is on a list of medications... still on a low dose of the Dexmedetomidine, Morphine, Valium, Oxytrol patch, Tylenol and Robaxin. Those are just to treat pain and varius muscle spasms. She is also on Cefoxitin an antibiotic, Lasix for fluid, and Decadron for inflammation in her throat from the ventilator tube. I think she is relatively comfortable for the surgery she has had. She has been awake most of today I am praying that she will get some rest tonight. Also today her A-line was removed. And hopefully either tonight or in the morning her NG tube will come out.

The hardest part for Bart and I is watching her. She is just so pitiful, it just breaks my heart. I think also she is upset with Bart and I. Even though we told her that she was coming to have an operation to have her bladder put in and to fix her tummy, does a 3 year old really comprehend what that means. She is sitting her while I type this looking at me with the biggest frown on her face, like why did you let them do this to me? How do you explain that even though this is painful that it is so worth it? We have explained what the incision is on her belly and told her what the pins and fixator are for. She didn't seem interested. I believe this is honestly harder than anything we have been through with her. I know my happy little girl is in there somewhere and I am sitting, waiting, wanting to hear that sweet little voice again.

Tonight I pray for peaceful rest for Gabrielle and acceptance to what has been done to her. I also pray for enlightment for Bart and I on how to help her accept this.