You know, I could tell you more than you would ever want to know about seizures, Trisomy 9p, g-tubes, and a myriad of medications. What I don't know a lot about is congenital heart defects. I didn't know that 1 in every 125 babies born in the USA has a congenital heart defect.
Because Taylor's heart defect was never a big issue as she was growing up, I never thought of her as a "heart baby". Apparently she is…or was. Now she's a "heart girl". There always seemed to be something else trying to take Taylor away from us that didn't involve her heart. Seizures have always been the big, bad evil thing going on in her life…they still are.
However, now that Taylor is in the first stages of heart failure, I have to start thinking of her heart first when she gets sick. A couple of weeks ago, when she was sick on the weekend and we had to take her to Urgent Care, I actually forgot to mention to the doctor that she has a heart problem. After listing her main diagnosis and the seizure disorder and all the seizure meds, I just forgot failed to mention that Taylor has a heart defect. It sounds bad, I know.
It's just that Taylor's seizures have been the main focus for 18+ years. Her seizures have been what put her in the ICU on a ventilator more times than I can remember. Now, it seems, I have a "sort of new" issue that I have to remember to tell the doctors. That way they won't freak out quite so much when they see her blood pressure and I have to go, "oh yeah, by the way…".