We are going home!!!! New medication protocol is in place but will take some adjustments with meds the current med protocol because a few of her meds can’t be taken together but are still needed so we need to stagger them now. (If anyone wants to come help me figure this out please help!!!😉)
We had an really good fellow today who rounded with us this morning. At first I wasn’t sure why she was asking about Addysons fever disorder and pots during our gi round when we were all discussing the new protocol. The gi dr brushed her off saying it sounds like it’s being tracked so I’m not concerned. She ended up going back and cancelling what she had for the day and she reviewed Addysons chart. She came back and spent two hours in our room discussing each diagnosis and our current issues with each one. We went specialist by specialist while we talked through the good points and where we are still struggling. I told her we are just parents trying our best. She said she thinks we are doing amazing and she was super proud of Addyson this morning during rounds. She asked me to gather a few documents and send them to her so she can try to help get a few of the major issues ironed out. I hope she can help but I understand she’s a fellow and she may get outranked. I told her I appreciate her coming back and talking with me in detail. She said I’m just so interested in your daughter and her case. She said I hope we can one day help her and or help the other kids like her. I said I hope so too.
Tomorrow we follow up with neurology.
Beaming with hope 