Still here!!!

  Here we are days 8-12. Wow the days fly by. I got a little behind because Ky had a rough turn starting Sunday night. She stopped handling feeds and started retching. That went on through Monday and we eventually had to stop her feeds all together and she was put back on an IV and pedialyte. She had a really tough time and a lot of pain and wasn't sleeping. She started to perk back up today and they are trying to start feeds back up again this evening. We had a meeting with the surgeon, dietician, social worker, patient care coordinator, and nurse. The GI couldn't make it but we outlined a plan since we have been continually ending up back at square one as far as we are right where we were when we got admitted 12 days ago. This frustration was definitely building just due to feeling like even after all these surgeries we are still a lot farther behind than we would like to be. Our next step is having to put in a GJ tube which instead of feeding into her stomach will feed directly into her intestine. The point of that is basically just bypassing her stomach which is not stretching enough to tolerate the amount of formula needed to keep her hydrated let alone give calories. I am trying to keep my positive outlook but some days it's a challenge. I just keep feeling like we are not making progress. They just keep telling us she is complex and things aren't going according to plan because of that. We did get our surgeon to agree to come see her daily himself instead of sending his partners because I couldn't handle all the cooks in the kitchen changing things adding things it was all adding to my stress about the whole situation. We would like to be home by this weekend and let her recover at home but we aren't sure which route is going to get us there. Her cdif infection has passed and we are at least off isolation and able to take her outside. She is such a trooper and loves her wagon rides around the halls. We are so incredibly blessed with all the meals, prayers, visits, and support.