update

It's been hard to post and update. I'm not sure if it's exhaustion or the lack of good news. It's my nature to always try to find some good in the bad. I think if I don't find some good something will snap. When I can't find good I go silent and withdraw. I hate that feeling. Like I said in the last post, while Kyle's surgery is a success in the sense of everything they needed to do surgically was done, it is not a success in what we so needed to be successful. The amount of bile that is still pushing into his esophagus is painful and even though it's still on suction 24 hours a day he is still struggling with pain.

So, our new plan. On Tuesday Kyle will head back to the OR to place a pacer(a temporary pacer a permanent one will not be placed unless we see it working) in his small bowel. While gastric pacing is more common we know that trying to pace Kyle's stomach will not do us any good. So the surgeon is going to place one in his small bowel. Not done very much but we are willing to try anything at this point. It is our second to last option before a transplant. The word transplant is being said with much more frequency around us and it's brutal to hear. But that's a post for another day.

For now we are enjoying the kids being here for a few days and I am holding them and loving on them every single second. It was a brutal drive for them but Mark was amazing and it's been so uplifting to have them here. Hard for them to see Kyle in pain but they are handling it so well....we have had some talks with them and they know that him and I will be here for a while. They are so strong and so brave. I'm so proud of them.

XOOX
K