We home from Cincinnati. The eye doctor took some pictures of Evans eyes, to send to another doctor. She told me to use the ointment 4 times a day on his eyes, and use the other ointment at night. So he has to different ointments for his eyes. I hope it helps. We go back in September to see if his eye are any better.
Evan had ultrasound done on his kidneys and his bladder. After the doctors read it, we had to talk to the doctor.
Evans kidneys are good. So that was good news. His bladder had some bacteria in it. So that's no good. But the doctors told me as long as he don't get a high fever or get really sick he will be okay. I asked them what else can we do. He still hurts to pee, his bladder it tearing and getting clogged up in his catheter. He said nothing else he can do. He said if it was he would do it. He said we need a cure for EB. EB is doing it to him. His bladder is just like his skin it tears and then it heals. He said he can't get bigger tube because it will hurt him more. He has 16inch catheter in now and he said that is big for him. I asked him, what is going to happen if he leaves this catheter in for a long time. The doctor hear at home said its not good to have Supapubic Catheter in for a long time. The doctor told me he will be okay for now. But the risk is that he can get cancer in his bladder. You no me i didn't like to hear that. But this is the only thing we can do, he has to pee. Evan has to get a ultrasound done every 3 months to check his bladder and his kidneys. We will be going back in September to see the Urology and get another ultrasound done.