This past summer, Taylor loved just watching this
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…".
3 comments:
It's not a bad thing that you forgot to tell the doctors about Taylor's heart issues; very easy to understand how that could happen as the diag. hasn't been in your lives as long as all of the other things.
I will continue to keep Taylor, you; the rest of your family in prayer.
hugs,
It's very, very easy to understand how you can forget that. Samantha was a heart baby, but after her repair all's well. But I do forget to mention it when she sees any new doctors who ask about hospitalizations or health issues. "Oh yeah, she spent a week in the hospital having open heart surgery..." And it'll be easy to forget the little card we have that states that she needs antibiotics before any kind of surgery, including dental. I hope Taylor's heart issue stays minimal for a long, long time and that you can continue to have those "oh yeah..." moments.
I miss you, Dawn! I'm just stopping by again to see if anything is new with sweet Taylor and to send my best to you all. :-)
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