Josiah's brother and sister in law came in this weekend for a wedding. When they arrived, however, we were at CHOP's ER. :o(
Let me catch you up...
Wed morning when the nurse got here she took Dillon's temp and it was 102. Yikes! But we thought maybe he was just warm and we had to get out the door to get to CHOP for his post op appointment for urology and ortho. One the way to CHOP Dillon vomited so many times, he was fighting his brace, he was going crazy! It was non stop the whole way to CHOP. When we got him to the first appointment we saw his stomach was puffed out (and since he was having such a hard time, he didn't get food.) We vented his belly and got a lot of air out of his stomach and he still had a fever. We went to the next appointment and put him on the bench to rest while we waited. I carried him back to the X-ray room, then into the appointment room (let me remind you, Dillon is NOT light!)
While we were waiting I heard the doctor in another room telling a little baby (maybe 9 months old) "It isn't THAT bad!" as he/she was crying while having his/her brace adjusted. Then Dr. Sankar came in and said the brace has to stay on for two more weeks! My heart hit the floor and my blood pressure hit the ceiling. I specifically asked at the last appointment what the chances were that the brace would need to stay on longer. He told me "Almost never. I always take it off after 6 weeks." Well this time he told me, "I always take the cast off after 6 weeks, then put a brace on but since he already has the brace we will just leave it for 2 more weeks." What? Why wasn't that explained to me when I specifically asked? Because he isn't listening to me, he is always in such a rush to get out of the room. I was so excited to let life get back to normal for Dillon, Jay, me, everybody! Jay has been having a hard time the last 6 weeks and I was so excited that everything would start to go back to normal. Well it won't. Anyways, then Dr. Sankar started ripping, and yes I mean ripping, the tegaderm off of Dillon's incisions. I told him to stop and that I would do it at home. He wanted to see them, however. Then I asked him to get adhesive remover and he said "No, tegadrm comes off easily" Well Dillon's heart rate jumped up, he got all tight and mad. Remember now, he is horribly sick and doing bad as it is. Then when he was done ripping it off he started to pull off the steri strips that are on top of the stitches. The nurse suggested he stop and just cut the loose part off so he did that. Then he started to rip the sock off of Dillon's leg that was stuck to him. Again I told him to stop and the nurse told him to let us soak it at home so it won't rip Dillon's skin. After he was done, I looked at Dillon's legs and saw tons of red cuts in it where the tegaderm cut him. The nurses answer "Oh he must have very sensitive skin." I know this! This is why I asked him to use adhesive remover, this is why it is written in his chart to be very careful with adhesives.
I do NOT recommend anyone going to Dr. Sankar. He may be a great surgeon, but he has no bed side manner to be dealing with children. He is in such a rush he doesn't listen to questions and give you honest answers. After my 6 week check up I will start going to another hospital for Ortho.
Dillon has 2 more weeks in the brace - he can come out for a bath but that is it. Then he is allowed to come out of it without even having another X-ray. The biggest fear is if the leg crosses mid line it could dislocate the hips again.
As we left CHOP Dillon was doing as bad as ever. He was horribly sick so we rushed him home and put him on CPAP. He did calm down a bit, but still had his heart rate 140-180 (better than up to 230 like it had been at the hospital). I had given probably 80 drops of oreganol through the day. That evening his fever went to 103. That night we were trying to figure out what was going on with him, we thought he didn't have a bowel movement since Sunday evening since it wasn't recorded anywhere in the nurses' notes. That night, our nurse called off and they couldn't find a replacement. Which I am not sure why because the two nurses I have had since both said they could have done it if they would have been told when I was told (5pm) instead of 9pm or not being told at all. Thursday morning I called the doctor and told him everything that had been going on... you guessed it... he sent us to CHOP's ER. They did an X-ray which showed some back up, but not a blockage of the bowels. The blood work came back clear, and they did a strep test. By this time, Dillon was doing great. Other than the 4 sticks it took to get his blood/IV. They ran some fluid and said it is probably a virus that has to run its course. Josiah came to the hospital with his brother and sister in law and we were all there for several hours.
Since then Dillon has been doing much better. I think it was a virus and the oreganol knocked it out of him much faster. He still isn't handling his food as well as normal, but it is much better than it was. Friday we went to Valley Forge park with everyone except Dillon who stayed home with his nurse. Yesterday Grandpa, Grandma, Daddy, jay, Truett, and I went to Lancaster to see animals, eat ice cream, and buy pumpkins. Since we had a call out we had extra hours to use so again Dillon had to stay with a nurse. I can't wait for this brace to come off so he can do things with us again!