A fog

The last few days have been a total fog, we went into surgery hoping for one outcome and we got a call from the OR 2 hours into Kyle's surgery with a different plan. The pledgett/mass of surgical material that was in Kyle's esophagus had attached itself to his liver, stomach and the lower half of his esophagus it was completely embedded and had destroyed the top half of Kyle's stomach. There was no chance to save the tissue and so they had to detach Kyle's esophagus from his stomach and attach the esophagus straight to Kyle's intestines. His stomach is now completely bypassed. This was bad news to us, clearly. The news was shocking at first and then we had a chance to process the news and we are trying very hard to see the positive side of this...he will have NO reflux at all which is really good news for his lungs. We are hoping that this may cut down on his stomach pains (his stomach is still there and does still empty into his intestines) They did put in the J tube so he now has a G tube and a J tube...2 tubes on his tiny belly. His body is very swollen still and we are still struggling with pain issues. He went thru so much, so while we are prepared logically for the pain the reality of the pain is so hard to watch.

We feel overwhelmed and heartbroken that Kyle is in so much pain. We keep hoping that every surgery, every test, every new medication will give our sweet boy some relief....We are keeping that hope and faith alive that this will all be worth it for him....that this is a new beginning for him. The next few days will be rough but Kyle as always continues to amaze us.

XO
K