OK, so scratch the last post. Things have changed and we are now at option 2, which is them building Gillian up enough to have surgery. They will take out part of her colon, give her and ostomy. When that heals, then they will take the rest of her colon out, make a small pouch from the small intestine, create an ostomy out of that and when that heals and the SI learns how to do the job of the colon, she will have reconnection surgery. 3 surgeries in about 6 months or so. The name of the surgery she is going to have (for those of you who like to look things up on the net) is SubTotal Coletomy with Ileostomy. I am purposely staying off the net because there is a lot of scary stuff out there.
Gillian is in massive pain. You know when a 16 year old wants an ostomy, that it must be bad. She had a blood transfusion the night before last and that helped. She is getting Morphine now and that is helping too.
Katie is a mess. She is crying at school, not wanting to leave us. This morning I put her on the bus and she told me while we were waiting for the bus that she is having a hard time getting her work done because she is worried. Break my heart. Oh, wait, it's already broken. I miss her so much when I spend the night at the hospital and all Katie wants is for her family to be home. We all want that. I just told her that the best thing that she can do is to do her work and try to have fun at school. We tell her everyday what to expect, "Where is Mommy going to be, where is Mama going to be, who is getting you off the bus, etc." and we make sure she gets to Ballet and Soccer so that she has some real continuity.
Our church family has been wonderful. Dropping off food of and on so there is always something to eat in the fridge. Coming up to visit Gillian and say hi to us.
I do believe that God has us in His hands. That is the belief getting me through these days.
Cheryl is still working as much as she can, but can take FMLA. We are trying to save that time for when Gillian has the actual surgery since there will be 3 of them.