Cyclosporine

Well Austin's 8:15 MRI got moved to 11:15 and it was noon before they took him to the scanner. Dr. Grimley also wanted to do a lumbar puncture in Austin's spine while he was under sedation. This is a type of blood culture where he can see if there is any viruses in his spinal fluid. Dr. Grimley did this right before the scan. It was almost 3:00 before we got back to the room. When we got back Austin drank 4 ounces of milk right away. About 3:30 Dr. Grimley came in. He said the MRI wasn't really conclusive on finding the drug side effects on the brain. He did comment on the tissue behind the eye again. He said once again it hasn't gotten larger but in the three dimensional view it does look like it has gotten somewhat smaller. He did say that there was a spot on the back of Austin's head, he called it something but I can't remember the word he used. It has a little fluid there basically. He said he didn't think it was Neuroblastoma and it was there on the last MRI. He said the will do another scan in a few weeks and check it again. He said it was probably something they will just continue to watch. There was no virus found in the spinal fluid. He said now looking a the bigger picture he feels it is Cyclosporine Toxicity. His levels of the cyclosporine in his body are still high and he was been off the drug for days now. A lot of the side effects lean toward that it is the cyclosporine too. It will take a little while for it to get out of his system. He will start another drug Prograft this weekend. He said there was nothing else to do so he was sending Austin home. Yeah!! So yes we are home.When we told him we were going home he was ready to leave right then. He asked for my purse (which means bye bye we go).We tried to explain to them that we had to wait for the nurse. Yeah good luck explaining this to a two year old. So finally after the nurse took his needle out Nannie got Austin dressed as I went over discharge instructions with the nurse. He brought over the hospital blanket that I had been using. I guess he thought it was mine. He was wanting me to bring the hospital blanket home. He was so silly. We do have a clinic appointment tomorrow morning for his blood draw and to check his fluids. He is SOOOO happy to be home but is very needy. Not trying to be mean but I have to carry him every where because one, he doesn't have the strength to walk and two, his feet are still real sensitive. I just gave him a bath and he is laying on the couch watching movies. He did eat some of his pizza. Austin seems to better but not at all yet himself. It is going to take some time. So each day he will get stronger and more and more back to himself again.

Elizabeth