Hope

I had to wait two days to blog about Wednesday. If I didn't this post would have been filled with way to many emotions and I just couldn't go there. Now that we've had a buffer day I feel more level headed. Taking Kyle to the hospital for anything is hard on all of us....and by all of us I mean our entire family. Alex and Jack always have 100 questions and Alex always gets this look of fear on her face. For Mark and I anytime we have to watch our baby rolled into the OR and put to sleep it's beyond painful. We know that with Kyle nothing ever goes the way it's supposed to and we usually get some bad news during this process. I have to say Kyle was nervous this time, he asked us a few times if this was going to be like last time (his last major surgery) we reassured him that is wasn't that this would be quick but that he would wake up with a tube in his nose. The tube was super important and it would hopefully help us get his tpn hours down a little. I have to say he was totally cracking us up on the way to the OR, this kid knows the drill and was asking for the white sleepy medicine.

We expected 30-60 minutes of wait time, a quick scope and tube placement....after an hour we started to get nervous...once we hit 2 hours we knew there was a problem. His dr came out and the look on her face said it all.... The tube could not be placed it became dangerous to keep trying, his lugs were not happy and they had to re intubate him 3 times....steroids were given and breathing treatments started. His anatomy is to complicated and they couldn't get the tube far enough down. They also discovered a pocket located and attached next to his esophagus where spit and bile are pooling and this is why he's vomiting so much....

So where so we go from here, Monday we'll be admitted and Kyle will have a blood transfusion....he's not making the blood he needs and now is severely anemic. Next Friday we head back to the OR and a new team along with Kyle's GI dr will try again to get the tube inserted. They are promising nothing but we have to try again, Columbus needs this info to plan our trip there....if we can get feeds started this is major for us and for Kyle...if we can't....well we are not going there for now. We just aren't.

Kyle's had a fat lip and a bloody nose, vomiting alot and overall sad since Wednesday...We are trying so hard to keep him comfortable, happy, safe...I feel like we are failing him on all fronts. I can't go inside of him and fix his body.....it's horrible to be able to do nothing to bring comfort to your child.

This weekend we are just hanging as a family and trying to keep Kyle and the other kids surrounded with love. We still have hope. After a phone call with Kyle's dr late at night last week she said, are you giving up? You sound sad. I let her know I will NEVER give up on Kyle, never...but am I sad....yes. Very sad. But I still have HOPE, and I will have hope even after they tell me not to.
Kate