I am so incredibly frustrated! The neuro-oncologist came back and saw Jon at the same time that the resident on the floor came in. The resident was asking if I was comfortable to go to home. I was trying to explain why I was frustrated and not sure what to do.The resident was telling me how neurology didn't think it was seizures and how they think he has this movement before. Which is not true. They said that they think it could be a different medicine. Honestly, I think they just don't want to be bothered by coming to see him. The neuro-onc came in and said he really thinks its just an illness. But he doesn't know what it is that is wrong. He wanted me to know that I could decide what I was happy about and not to feel pressured from anyone. I asked him what he would do if it was his child...he said if it was his wife she would leave in 3 seconds because she does not trust doctors and hates them. He said if it was him he would stay. But that I should do what I was happy about. I asked him if he honestly thought I could take care of him at home and he said well that is complicating because I have a small tribe at home. I told him that my small tribe needs me at home if he really didn't think he needed to be here.
I don't know what to do. He said that he promised if I were to go home that they would call Monday and check on him and see him monday and do more tests on monday if it is still going on. I hate this part of being his mom! I hate taking the risk. I hate that things are so complicating that no one knows what to do. I am going to wait for Shawn and our friend to get here and pray with them about it and then make a decision.
Please pray for wisdom in this decision.