Addyson is having another surgical procedure done on Wednesday. Because of that we had the anesthesia consultation today.
With that phone call came the hundred questions.
Does your child have seizures-yes. Are they controlled? What meds is she on, etc
Does your child have asthma. Yes etc etc
Does your child have heart issues. Yes. Does she take heart meds. When was her last echo and ekg. Does she have long qt—-yes
Does she have a bone deformity- yes
Is she immunocompromised. Yes.
How’s her airway. Good!
How controlled have her fevers been with the fever syndrome.
How’s her autonomic dysfunction? How’s her hydration been… and her hr and Bp?
Every time we have to go through the list it’s a kick to the gut. We have been so stable that it’s easy to forget she still has a lot going on internally. Stuff that won’t go away. Stuff that is serious. She has very major organ systems affected.
Beaming with hope 