So we had a long talk with the doctors this morning. The new plan is to start a new drug called cytoxen. It will be replacing the methotrexate. They will start it this afternoon. The side effects are a bit more crazier than the methotrexate. They need to give him a bladder protector and tons of IV fluids before they run. One side effect can be bladder cancer later on in life and infertility. I asked them not to say that but they said they have to say it. I thought to myself I realize that but I meant it in the way of I don't want to hear that. The one thing we have going for us is he is only 2. The "little guys" aren't even being made right now so it increases the protection. Gary has had nothing by mouth for about 48 hours. Last night was kind of hard because he cryed for about an hour until they gave him more benadryl in his IV. It worked really well. The muscles in his laryx are also showing signs of weakness. I know that because he is suddenly using different words for things. Bottle use to be BA BA. Last night it was MA MA. Bill he was saying clearly. Bill is now MILL. Uncle Bill joked that he would call him "Flary" then. Tomorrow I will give an update when I can after the swallow study. That will determine if we are going to be sporting a feeding tube. The dietician came in while we were "on break" and he has orders in for more glucose intravenously. I have not seen what else is going to be put in. I did read some advice that talked about Gary's nutrition. I so appreciate advice like that but right now it is just to risky to go and say well I want him to eat a fishes eyeball. I think that will fix him. No spank you. Maybe if it was a little less serious. I know increasing his immune system seems like a healthy thing to do. But in a immune system that is destroying a body, I see no reason to give it a boost of any kind. Definetly worth looking into more but I am not going to implement something like that when swallowing to the point of possible aspiration is there, not good. Don't want him aspirate a fishes eyeball. Ewwwy.
Elexis is at home with Grandma and Grandpa sick. She is running a fever and has a cough and my heart is torn. I want to be there with her while she is sick. But I have to keep it together. Robert will be here with me until Monday. He has called in so I am glad. I am a bit more relaxed when my husband is here.
We can't stress enough how grateful we are for all the well wishes and the offers to visit. I also can't thank everyone enough for all the prayers.
Jessica, Age 12 Brain tumor, family is from Alaska and has been in here since January. I asked her Mom about her prognosis and she said it was in God's Hands.
Justin, Age 11 He has a mitochondria disease. His outcome is said to be fatal. But they are fighting. Prayer for his line infection to clear up.
Aden, Age 3 Double blood infection. He is a small person who is amazing and full of energy. He has been keep our unit entertained with his naked antics. Gary tried to join him but his legs wouldn't allow it.
Please include Elexis in your prayers. I just want to be there for her too. Prayer for my family. I fear this whole situation is wearing on them. There is nothing I can do about that but I just don't need them stressed out or worried or burdened by all this.
I find myself walking the halls of this hospital feeling a bit more boulder and less shy. Justins Mom said that is the one thing she looks for is relationship with the other Moms. She enjoys that being a single mom and having someone to talk too.