Our motility gi Dr who we have had for years retired in December, so today we met our new one.
I liked her… She listened to our questions and answered in normal everyday language. She also agreed that if meds / protocols aren’t working, then let’s stop them, so today we removed two meds from her daily protocol.
We discussed how addysons condition will never be cured… But we can focus on getting stable… That for us stable would be success. Tough to understand that our goal is just ok… Just stable, however we get it and accept that.
We discussed all her conditions and how they all tie back to her central nervous system and how all organ systems will continue to be affected because her brain doesn’t function appropriately with each organ. On Friday hopefully we can discuss a better plan with the aadp team because we are not satisfied with her current plan.
As for today’s appt with the surgeon…. We have decided to cross them off our list. We will stick with our surgeon at Hopkins or with the other pectus surgeon we are talking too, but chop is off the list. Sometimes these days that don’t go as planned seem like complete wastes, however sometimes crossing someone off the list is a step in the right direction. You have to feel comfortable with your surgical team, so If you don’t, Keep looking. This guy is not the guy for addyson. (And that’s ok).
We did get to see a friend today and her daughter, so that always makes the day nice. we all try to plan chop visits together when we can, just to give us a minute to catch up. We also had our friend sandra (aka: addysons bestie) go with us today, which is a huge help to me. One the drive isn’t awful (usually) but it’s just a long day (left before 7, home after 4) and two it helps to have a second set of ears to take it all in. So much information is always thrown out at one time.
Beaming with hope 