Evan had surgery Wednesday. It didn't go as good as i was wanting it. Evan's airway is really small he has lot of scar tissue and it is swallow. The dilation went good. The ENT came and talk to me about his airway he said we are going to have to do something. He said that he could cute all of the scar tissue out and open his airway up. So he is going to talk to other doctors and let me no what they are going to do. Then the urology came in and said he change out his catheter. He said the lining of his bladder is gone. The EB is in his bladder, they said there is nothing else they could do. This is the safe and the only thing they can do because the other things they could do would tear up his skin. So Evan has to keep his SP catheter. Evan had bad UTI Saturday so he is still antibiotics.
After surgery they took his tube out of his throat and he could breath, so they had to put it back in. When he got to ICU Evan was so up set he pulled his tube out his self. So they had to keep oxygen on him, sucking the mucus out they was giving him breathing treatments. Then they gave steroids, finally his breathing got little better. The next day he was going little better. Thursday we got to get out of ICU and go to another room.
Today he had the video swallow test done. It turn out good. He just has to drink really slow and not fast.
Today we get to go home. Evan is so happy and so am i. we just have to watch him close with his breathing.
THANKS FOR ALL THE PRAYERS.