Brittany, it does get exhausting having to repeat your history and current status over and over to various people. My son does his best to respond to his personal doctor’s but for the rest, such as the “doctor’s in training”, he points to me and I take over the talking. Like you said, having as much on paper that can be handed over really comes in handy. You and your mom sound like an awesome team! Witnessing how the two of you work together for the best of your health probably seems complicated to an outsider, but in reality what you have is a highly functioning system. I bet you often feel like you share a brain and that she is always a tremendous comfort to you, especially recently!
We are right there with you on making sure things don’t proceed without the direct communication of our personal care team and doctor’s. There have been times when a decision was being made and I had a concern that everyone who should be in the know, wasn’t, so I would start making calls and sending e-mails and not rely on the staff paging system or the promise that a certain doctor would be contacted.
On a positive note regarding rounds, when my son was diagnosed with PH I found them to be a great learning tool. I would always have my notebook in hand and would write down a lot of what was being discussed. When I would hear a word I wasn’t familiar with or hear something I didn’t understand I would circle those in my notes for research later. If I still felt confused the next day then I would bring it up during rounds if there was an opportunity or inquire by phone or through e-mail. By doing this I became very knowledgeable and capable in contributing to the conversations during rounds, to the point that it was so tempting to answer the questions being asked of the residents. It sounds like your mom has utilized rounds in the same way.