Tuesday, November 10, 2009

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 30th. 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 1st birthday. I love that girl more than I could ever find the words for.


7 comments:

heather said...

the more i learn about taylor, the more i love her too! she's a tough cookie!

i'm sorry she's sick. i hope it's not the flu. but can you not get it twice? what if she did? insurance companies annoy me, but her doctor will need to call them so that she can get the meds she needs.

The Silva's said...

I agree with Heather, the more you learn about Taylor, the more you love her!! She is such a precious girl.

We have had the dx of H1N1 only to have them take it back, of course that was after the $200+ in meds. It stinks!! Hang in there, hope Taylor is doing better soon:)

justjaime31 said...

ya gotta love doctors and there well maybe she is sick, but ya know, maybe not??? Makes ya wonder sometimes what they learned in medical school lol

Taylor is one tough young woman, and i am glad she proved everyone wrong!!!

barefootRhys said...

taylor is tough and strong. i can picture her giving the drs a good 'so there' on their negative outlook all those years ago.

my nephew had a diagnosis of Hini twice. validly. it can happen.

sorry things are so rough.

Becca said...

Wow. Samantha was given Tamiflu for her supposed H1N1 this week, but her doctor also put her on the list to receive the vaccine when it's available at their office. Does that mean that she can still get it a second time? It sounds like they're telling you she shouldn't be able to get it again. Interesting...
I hope Taylor's feeling better. Good for her for fighting the odds!!!!

SWPMom said...

Go Taylor! I would say "screw you" to those doctors too.

I'm sorry you are having the deal with the flu again (or not again). Sending you hugs!

GrammieMommy said...

I love Taylor. She's a toughy. Im so sorry she is sick and hope she recovers quickly.