Thursday, June 23, 2011

Evan catheter got clogged up again yesterday. I had to take him to UVA. They changed out his catheter while he was awake and it was bad. He was in so much pain when they did it. But he did good. He is a strong boy. I hope he can keep this one in for awhile. I don't know what they are going to do, he can keep this up. Today he is sore. He hurts when he pees. So i don't no if he has infection or not. So I'm going to take his pee to the doctor so they can check it.

Tuesday, June 21, 2011

Saturday, June 18, 2011

We are home from the beach and I'm so glade. Evan had bad week. We got there Saturday around 3:00 and he didn't feel good. I new there was something wrong. His peeing wasn't right he didn't have that much pee in his bag. that night he got worse. Sunday he was in a lot of pain. He couldn't pee at all. So i kept on flushing his catheter out and praying that it would help. It didn't we had to fine a hospital. I new i didn't wont to go to the hospital because they wouldn't know about Evan's EB. So we went and they was nice, they had to transport us to a children's hospital. So i got scared again, new doctor. We went to Kings Daughters hospital, they where so nice to. They gave him morphine to help him with the pain until they could get him in the OR. The urology doctor came up and talk to us, he said we will get him in now. So they got everything ready, that time Evan was in so much pain, i felt so bad useful. I couldn't help my baby and he had to pee. They got him in the OR. Then he went into the recovery he was out. He wouldn't wake up at all. We went back to the hotel and Evan slept all day. The next day he was a different child, I was so glade.
Wednesday I took Evan out on the beach. He was out there hour or two. I took him in gave him a bath. He told me he didn't feel good. He got up on the couch and went to sleep. When he got up he told me he didn't feel good again. He felt hot. So i try to get him to eat he didn't wont nothing. So that night he got sick. The next morning he was fine. So i don't no what was wrong with him.

The week way from home was bad. Evan was so home sick. I will never go on vacation again. Evan loves to be at home so that's where we will be for now on.
My girls had so much fun they love the beach. They was ready to come home to.
We got home to day and Evan was so happy. He played with his trucks and he played. He is feeling better. He still has low grade fever. So i will have to watch that.

Friday, June 10, 2011

The heat is bad. Evan skin is so bad right now, and its from the heat. He has been inside now for two days. Its so hard to keep him in when he sees his sister out there playing. It sucks. I hate to tell him no that he cant go outside, that is his favorite place to be.

The doctor has Evan on Cipro for his UTI, and his skin infection. His ankles are still hurting him so bad.

We are leaving in the morning to go to the beach for a week. I hope Evan likes it. I'm going to put him in the ocean and i hope the salt water helps his sores. I'm going to take him down early in the morning, so the heat wont be so bad on him. My girls are so happy they cant wait. We haven't been no where in years.

Evan still not eating like he should. But he is still drink his pedisure.