By the Way Doctor, I Forgot to Mention…

This past summer, Taylor loved just watching this

truck go 'round & 'round.

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…".

Conundrum, Thy Name is Taylor

Taylor after her PICC line placement (before the port)

I'm going to whine for a few minutes. Well, maybe it isn't whining as much as it is complaining. Yesterday was a rough seizure day for Taylor. Okay, I can handle that. That is nothing new for us. A good seizure day is less than 50 a day, so seizure free isn't in our vocabulary.

Anyway, Taylor wakes up at 3 am coughing with a temperature of 101.5. Fine…I can tell this is going to be a rough winter. Taylor alternates. We have good winters and bad ones. This is shaping up to be a rough one. I'm assuming it can't be the flu because we've already been there, done that a few months ago.

I take her to the doctor and he says…she has the flu. What? I mention that he diagnosed her with the H1N1 flu back in September. Now, don't get me wrong, I love our doctor. He does the best he can with Taylor and that's all I can ask for. The Trisomy 9p throws most of the doctors off. However, I'm expecting him to come up with something other than the flu…a cold maybe? He says to me, well, she either had the flu back in September and she doesn't now or she has the flu now and she didn't back in September. Yeah…I'm guessing your faces are probably looking like mine did.

We are treating her for the flu again. But guess what? The insurance won't pay for the Tamiflu because she's already had the flu and so she shouldn't need Tamilflu again. Whatever. I'm just going to treat her symptoms and see if she gets better. If she doesn't, then we'll know she needs something else.

On a side note, Taylor was born with a heart defect. She had a VSD but luckily it closed on its own when she was 6 months old. She also has a bicuspid aortic valve with aortic stenosis. Now this defect ended up being the least of her issues but as she has gotten older it's starting to cause some problems. Her doctor did notice her fingertips were a little blue and her lips were not pink…but they weren't blue either. They were sort of in-between.

I told the doctor that she has an echo cardiogram in a couple of weeks and she sees the cardiologist on November 30^th. To be honest, the doctors told us that Taylor wouldn't live long enough for her heart valve to become an issue. Well…she decided to prove them wrong and now that she is 20, it looks like a valve replacement will be in her future…again, if she hangs around for awhile longer.

Taylor is stubborn and she is having way too much fun in her life and I can just see her giving the finger to all those doctors that tried to write her off. I sometimes think she wishes she could just say a big "F**K YOU" to all those people that said she would never see her 1^st birthday. I love that girl more than I could ever find the words for.