Fighter

My little man is incredible. He is such a fighter...almost superhuman. He had a good day. Benjamin really started to wake up and move around alot today. He had his eyes open on and off and was very aware when we talked to him. His ventilation has slowly been going day and he seems to be doing a lot of breathing on his own. Finally after 3 tranfusions in 2 days his hemoglobin is good. He has now had 12 transfusions. He is very puffy and retaining a lot of fluid, but as he starts to move he will get rid of it. He has definitely got a lot of spirit. Even on a high dose of morphine he grabbed onto his breathing tube..luckily dad was close by to pry his fingers off. We're not quite ready to extubate yet.

The surgeon was in as well today. She has never had what happened to Benjamin happen before. She felt horrible, but obviously it wasn't her fault. There is always a small chance of a leak, but the two reconnected ends were not even close together. She looked at the incision and the stoma and was happy with how everything looked so far. There is a bigger risk of infection because the exit to his bowel is in the incision, which is not optimal, but the only way it worked. So they have to keep a close eye on that. She did say that he can start small amounts of milk on the weekend, if things continue to progress the way they are. This is exciting, but so scarey. The future now is so uncertain. Benjamin could come with the ileostomy. Jon and I can learn to care for it. The best case sinario is Benjamin can grow and heal and surgery can be put off as long as possible. But because this is in his small intestine nutrient absorbtion isn't great. Alot of nutrients are absorbed in our large intestine, his food will never make it there. So he could have trouble gaining weight and getting what he needs. There is also an issue with skin break down around the stoma. The nurses will do their best to protect the skin around it, but because his stool will be more liquid it can easily leak onto the skin. But I guess we'll have to cross that bridge when we get there.

Anyways that's all I know for now. I will forever be greatful for all the support and prayers. They have truly helped us through this.