Todays Appt

Today we had Surgical follow up and Rheumatology follow up

Surgical follow up went as expected. X-ray showed an extensive amount of trapped air. I mean enough that it’s pushing up on her diaphragm. We will begin Venting more. We do this often, but not scheduled times, we will try doing it 3-4x a day and see if it helps. Surgeon laid it out straight w/ Addyson. You deal w/ the pain or you go back to an ostomy. Those are your two options, you tell us when your done w/ the pain. We have tried everything else to make this work and this is just where we are. She understands and wants to keep chugging forward w/ the tools we currently have. We support her decision.

Surgeon also agreed we need to get in w/ neuro again soon to discuss the abdominal migraine piece. We have a repeat EEG scheduled in FEB and will meet w/ neuro after to discuss both issues.

Her pectus is worse than it was, which was already severe. He said it’s compressing and shifting her heart, so it will need to be fixed. We will begin the required testing/documents over the next year as we prep for a major surgery. I asked if we can have a cardiac surgeon in the room since she already has a cardiac issue. We will keep discussing this. We were informed that if her heart were to get nicked, they would crack her chest for repair as there would be no other way to fix it. This surgery is so scary, but I can see on imaging the issues it’s causing.

Rheumatology: Went as expected. We are confident that the flares she was having over the summer were FMF. As the new dose of colchicine has stopped those, which proves the point that those were FMF and the other flares we have happening are autonomic dysfunction. Rheum agrees that it’s tough because we literally help one thing and another organ system acts up. She also agrees it’s tough when you have multiple illnesses (FMF, Autonomic dysfunction, epilepsy, Mito, etc) battling against each other.

Rheum is going to get us together w/ the hospital social worker to help assist us on the school front. We are trying to better figure out next years course schedule to help her be less fatigued and retain more of the actual information provided.

Rheum also explained that we are looking for stability and she agrees, we aren’t there yet. She said school needs to realize that we aren’t ever going to be cured, or in remission. She said Addyson is chronically ill and while she might look “FINE”
She is not fine. She is sick and that needs to be taken seriously.

Everyone is concerned about the aortic root issue but we are taking that serious and have a follow up appt in two weeks to see where we are with the heart issue.

Next week we have infusion and FEB is super busy with appts. But hopefully by the end of FEB, we are closer to having a clear path forward on a few issues.