Sunday, February 27, 2011

Evan is still having hard time peeing. It has been night mare. I took him to the doctor last Monday to fine out what was in his tube and get his skin look at around his tube. He said he didn't really no what was in his tube, so he had to do a urine culture to make sure he didn't have no infection. So Wed the doctor called me and said he had bacteria infection, they had to call Cincinnati to see what to do. So they said he need an IV antibiotics. So Thursday we went to Roanoke hospital and they started and IV. They check his urine and did some blood work. It showed he had bad infection and his blood work showed that his HMG is 8. So they called Cincinnati and they said not to transfusion him yet. IF he is peeing in his tube for them NOT to change it. They will do it when we go up there next Thursday. So Friday even they said that Evan should go home with an antibiotics. They didn't wont him in the hospital because the flu is so bad there. He don't need that.
So Friday night Evan did okay but he is still hurting. Saturday night he couldn't pee at all. I flushed him out a couple of times and he finally pee. But he has big piece of skin coming into his bag. I just cant believe the skin that's in his bag. He is still having hard time peeing. He is trying so hard to pee he has gas, so i no my little man is hurting really bad. I wish there was something else they can do, it hurts so bad to watch my child pee and he cant and there is nothing that i can do. I HATE EB.

Friday, February 18, 2011

Evan has been doing okay. His eyes are not getting no better. They are really hurting him. His catheter was doing good until this week. I think there is some skin in there blocking so he cant pee. I have been flushing him out and hope it works. Wednesday night he got sick and vomit, i don't no what was wrong with him. Then he did it again that night in bed. He didn't have no fever or nothing else was wrong.
He hasn't been eating at all. But he is drinking.
It has been nice outside the last couple of days so we have been outside. Evan plays out there about hour and he wont's to come it. He gets to hot and he cant breath. Or he gets tired and comes in and lays down for awhile. I hate EB.
We go back to Cincinnati March 3 to see all the doctors and change out his catheter again.

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.