So, we had a "Bump in the road" today. Kylers CVL (Lumen Hickman line) "migrated" out of place and had to be replaced. I was so nervous but he did amazing! Even better than the first time. There was less bleeding this time and this doc did it w/o cutting Kylers neck. I was very happy about that. He got behind 2 treatments on busulfan but we finished up this morning and will start Cytoxin later today. His eczema is kind of bad on his legs but that has a lot to do with how dry the air is here bc of the air system that keep germs from coming in the room from other rooms. He is still nauseated every night but he is handling it so well to be so little. He plays up until he throws up and then goes back to playing. He is just so sweet and I cant believe how strong he is. I know this may sound crazy but Kyler is my little "hero". he has gone through things and handle them so well and if it was me I would be crying every time. He got and IV yest without numbing medicine and didnt even make a sound. I think he handled yesterday better than me. I wanted to cry when they told me he had to have surgery again and I guess he could tell I was getting upset bc he was sitting in his crib and I was beside him and he wrapped his sweet little arms around me and sqeezed me so tight :) After his sugery he saw me walk up and was practically jumping out of the nurses arms to get to me and his daddy. I know this is off topic but he brings out strength and love and feelings in me that I didnt even know I had. I am so blessed that God gave him to me.
Okay back on topic. Ky now has 4 teeth and working on 2 more. His smile is oh so cute! :) Medical wise, he will be coming off of dilantin 24hrs after he finishes busulfan he will start mesna with Cytoxin to bind to the Cytoxin so that it will help keep the cytoxin but cutting or tearing his bladder. He will stay on acyclovir, zofran, zantac,aquaphor for his eczema and benadryl as needed. He is still doing great with his mouth care, but the nystatin tends to make him sick. He will be able to stop it though after BMT when he starts his fluconazole. So far everything is going good. I will update soon. Please keep him in your prayers! Thank you to all of you who have been thinking about and praying for him.