Monday, February 7, 2011

Last Thursday Evan had his surgery. His doctor try something different he didn't think this would work. But i told him let try it. So after his surgery his doctor came out and talk to me, he said that he was going to keep Evan for awhile and make sure this works before we go home. So after i talk to the doctor they came out and told me to come to the recovery room. When i did Evan wasn't happy at all. So i told them i said something wrong this isn't Evan. So i rocked him and he looked at me with hurt in his eyes. I told the nurse i said he needs some medicine he is in a lot of pain. So she did, he went back to sleep. Hour went by and Evan hasn't pee. So the nurse called the doctor and told him. He said he needs and X-ray to make sure everything is okay. So two more hours went by Evan still hasn't pee. So finally the X-ray person came and did his x-ray. Then the doctor came back to talk to me he said everything looks good. So i said why hasn't he pee yet. He said he should, so I get him up and get him something to drink. So they said we could go home. I wasn't sure about this something was telling me there is something wrong. So I get everything ready and went to the car. Evan was in so much pain, i said again there is something wrong with him. So we get into Kentucky stop and get gas, and eat. Evan started going crazy he was screaming he was in so much pain. I looked in his bag Evan hasn't pee yet. It has been 4 hrs now. I told him that mommy going to call the doctor. I get the doctor on the phone he said come back. There must be something wrong. So we went back to the hospital and they admitted him. So doctor said he going to see if he can get some urine out, to make he feel little better. So they flushed him and nothing. They took his Catheter out and put another one in. They flushed him again an nothing. So he call the doctor that done his surgery. He said that Evan needs to go the OR now. We had to wait 3 more hours because Evan drank some milk. So finally 5:30 they said bring him in they new he was in a lot of pain. The doctor told me that Evan could get sick and have some problems because he had milk in him. I told him okay. They took Evan to the OR. I was so scared i prayed and prayed that there wasn't nothing bad wrong. The surgery was over and the doctor came out and told me that Evans bladder was full he drain it. He said that the EB was in his bladder. So the skin that's was in his bag. Is the lining of his bladder. He also said he put a bigger catheter in him so now Evan has 16inch Catheter in, he had 12inch. He said he hope this works and the skin can go though the tube. So they kept him there over night to watch I'm. He sleep until the next day he was so tired. So the next day we went home. Evan was so ready to go home.
On the way home Evan was hurting again. But he was peeing so that was good. That night Evan cry and he was still hurting, so Saturday night i called his doctor and told him that Evans was peeing but still in a lot of pain. He said he is having server spasm. He make sure you give him the medicine.
It's Monday and Evan is still hurting when he pees not as bad. I hope this goes away. We go back to Cincinnatia next month.


  1. oh bless his heart! My little guy doesn't have EB but has had issues before where his ureterocele (inside his bladder) blocked his prostate and made it impossible for him to urinate. I know he was in a lot of pain, so I can only imagine little Evan. I hope this catheter works well for him and gives him some relief.

  2. I am so sorry to hear this! My heart aches and wished with all my heart that EB did not exist. Will keep him in my prayers, please keep us posted.