Just in case you're curious...
We now have a date for Harlie's heart cath.
June 10th.
Someone at the hospital got wind of my blog entry from yesterday and by 9:30am I got an e-mail that I would get a phone call that day.
And I did.
The scheduler was nice, and explained what she was waiting for. But, a simple phone call to let me know what was going on would have gone a long way. And I would have cleared up the situation a lot sooner, and had my date a week ago.
Oh well. I have my date now and I'm "happy."
Her DC cardiologist gave the scheduler a window of 1 to 3 months. Combine that with the fact that Harlie seems to be doing well cardiac-wise (hasn't needed oxygen the past few nights with sats in the high 70s/low 80s) and I'm thinking I should calm down a bit.
One problem is that I'm no cardiologist. I'm a mom. Of a little girl that I love more than words can say. And I want to do everything humanly possible to make sure that we give her the best chance at the longest, most high quality life possible.
And it's my understanding that being able to get the Fontan (the next surgery she needs) is no guarantee. Pulmonary pressures could be too high, making the surgery and the result, if done, too risky. And since the only blood that gets oxygen is in the upper part of her body (her head - then the oxygenated blood mixes with the rest of the body's blood supply to get oxygen to the lower part of her body) the bigger she gets - the lower her sats get (because her body gets much larger than her head). And, I think typically, they like to do the Fontan at a younger age (even though there is no magic age for when it is good or bad). And I think she's out of the younger age category now.
At any rate, having this surgery hanging over your head doesn't feel good. And I would never want to push it to the limit and risk not being able to get it at all.
So, to get to the gist of it, I'm glad it's scheduled so we can get more information to make the best decision possible.
Whew!
Tomorrow morning Murphy and Tom are doing a Mud Run. I'll try to get lots of good pics.
Take care,
Christy
Saturday, May 1, 2010
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2 comments:
Who knew a blog could carry such clout! You had every right to be mad and sometimes that's what it takes to get the job done. Nice only goes so far. Can't wait to see pictures of the Mud Run!
Hugs,
Ann
So glad you got in! I hate the waiting game you have to constantly play... you, my friend, are truly a saint. You hold your stuff together very well - I think I'd have hurt someone by now with all the scheduling and insurance woes you've had to deal with in the last (almost 4, can you believe it?!?!) years!
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