Nothing big has happened, but Izzy has been Izzy and this
carepage is my record of Izzy's journey.
I don't often share how Izzy reacts to all of these things that
happen to her, but she is a very smart little girl and often has
strong feelings. You are probably not surprised that she doesn't
think life is fair, but when she complains that something is not
fair, we've always told her if she is right that is not. Of course,
she's almost 5 so some things that she thinks are not fair, really
are! This week though, she doesn't think it is fair that her heart
is dieing. Yes, those are the words she used. And she is not on
board with seeing the docs in Pittsburgh. She does not want to talk
to anyone who might want to take her special heart out of her body.
So, we made a compromise and Izzy agreed to talk to the doctors at
the heart-lung transplant center in Pittsburgh, but everyone will
listen to what she has to say about everything. (We were going to
do that already, but hearing that made her feel better.) And no, we
have not heard from them yet.
Valentine's Day is a big deal in our house because it is also CHD awareness day. Izzy wore her very special "Zipper Club" shirt to show support.
The kids also pretended to have chubby cheeks with their Valentine's gifts from mommy and daddy!
That night (well the next morning at 1:30am), Izzy came down with a nasty tummy bug. She kept nothing down for all of Friday and we were almost going to take her to the ER for IV fluids when my mom worked miracles! Needless to say, the rest of the weekend was full of rest (and legos, but you'll notice there are no pink legos. Izzy does not think that is right!)
And this morning, Izzy had another sedated CT. This one was two studies--first was of her temporal bones to see if those are causing her hearing to decrease as quickly as it has been; and second was of her head and brain because she has been having headaches right on the very top of her head for a couple of weeks now without explanation. Here she is sitting in the waiting room, playing two games of fruit ninja at the same time--double the fruit slicing fun!
After the CT, they gave her a purple popsicle and she wouldn't believe me when I said it didn't turn her tongue purple, so she needed a picture!
We do not have the results back yet, but I'm not expecting much. The one thing we did have today was a first. As I sat in the radiology waiting room, surrounded by other families with their kids, I thought "why are we doing these tests? Will it change what we are doing for her? Should I have questioned more?" Turns out, the anesthesiologist was thinking the same thing. He has taken care of Izzy on many occasions and we really like him a lot. After today's procedure, though, he questioned why we would do these studies and whether they are proper in the big picture of Izzy's prognosis. He warned that Izzy did fine today, but with her heart getting worse, we are flirting with danger. And life got even more real than before. I'm not sure how that was possible. Luckily for me, Izzy decided to lighten the mood afterward.
Valentine's Day is a big deal in our house because it is also CHD awareness day. Izzy wore her very special "Zipper Club" shirt to show support.
The kids also pretended to have chubby cheeks with their Valentine's gifts from mommy and daddy!
That night (well the next morning at 1:30am), Izzy came down with a nasty tummy bug. She kept nothing down for all of Friday and we were almost going to take her to the ER for IV fluids when my mom worked miracles! Needless to say, the rest of the weekend was full of rest (and legos, but you'll notice there are no pink legos. Izzy does not think that is right!)
And this morning, Izzy had another sedated CT. This one was two studies--first was of her temporal bones to see if those are causing her hearing to decrease as quickly as it has been; and second was of her head and brain because she has been having headaches right on the very top of her head for a couple of weeks now without explanation. Here she is sitting in the waiting room, playing two games of fruit ninja at the same time--double the fruit slicing fun!
After the CT, they gave her a purple popsicle and she wouldn't believe me when I said it didn't turn her tongue purple, so she needed a picture!
We do not have the results back yet, but I'm not expecting much. The one thing we did have today was a first. As I sat in the radiology waiting room, surrounded by other families with their kids, I thought "why are we doing these tests? Will it change what we are doing for her? Should I have questioned more?" Turns out, the anesthesiologist was thinking the same thing. He has taken care of Izzy on many occasions and we really like him a lot. After today's procedure, though, he questioned why we would do these studies and whether they are proper in the big picture of Izzy's prognosis. He warned that Izzy did fine today, but with her heart getting worse, we are flirting with danger. And life got even more real than before. I'm not sure how that was possible. Luckily for me, Izzy decided to lighten the mood afterward.
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