We saw a dr on the team and got a little info. She said we cannot decrease the immunosuppressant meds until we know this fistula is not a result of inflammation in that area and is not a result of GVHD. Not sure when that is going to happen but maybe next week. She still thinks we can go to GA. Let's hope so. I emailed our dr at NYU and asked him to please get us in to see the gastro he recommends and he did. We see him on Wednesday. He said it was best to see a GI specialist and not one that is dealing with just cancer. I have said all along that Cody does not have cancer there so we need a specialist. Tuesday we see the orthopedist at Sloan and then Wednesday the gastro.
Cody feels good and we got some new pain med, morphine, and it will not knock him out as the codeine does. He is worried about becoming addicted but I assured him that I would see that that does not happen.
We went to eat and he ate popcorn tonight and he is trying to drink more too. He took a little nap today in 'my' chair. He sleeps in 'my' bed and now has taken over my chair. We sat outside for a little while too. He likes that.
I rented a transport chair for him. It is like wheelchair but lighter and will help him if he cannot walk or we need to go long distances. He had a bit of an accident so I think I have him convinced to wear depends or something so he does not have one while he is out and waiting for a bathroom or one is too far away. He is really being strong about all this and it has to be humiliating. I feel so bad sometimes but he is strong for sure.
We are really hoping we can go to see Casey. Sue and Emily next door solved my dog problem and said they would take care of both of them. Emily likes to play with them and that is a big help. I used my resources and emailed a few people that might be able to put us in touch with someone with a corporate jet. We would be able to fly that way. That would be amazing!
Well, have a great weekend and we will catch up tomorrow. We have no plans which is a good thing.
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