Harlie's next heart surgery, the Fontan, is now scheduled for Tuesday, July 13th. Less than two months away. So hard to believe.
I don't want to do this again.
I dread every thing about it. The logistics, the being away from the boys (Murphy will be fine, but Cooper misses me when I go to bathroom. I don't know how we're going to handle the separation!) the food, the sleeping (or lack thereof), the standing next to her bed, seeing her after surgery, knowing that she doesn't understand, the stress, and the worry.
But I want her to live a happy, full, long life. So, it must be done.
Picking a date was difficult. No time is convenient for your daughter to have major heart surgery. Period. But I know that doing it now, while she is doing well and showing no symptoms (signs that her heart and lungs are having trouble) will give her the best chance at a successful surgery and recovery. Although knowing that doesn't necessarily make it any easier to take my perfectly fine and happy little girl in for a surgery that is very risky. The surgery itself is risky. And the recovery isn't easy. And it is a fact of life that some Fontans fail, which would be very bad.
Well, hopefully, her heart cath on June 10th will tell us that she's doing well, and her pressures are within a safe range for her to have surgery. Until then, I will try very hard to not think about it. Well, that's probably not going to happen. But, I'll try not to talk about it as much as I think about it. That's the best I can do.
Thanks,
Christy
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4 comments:
Oh wow. That's soon. And so stressful. Wow. I thought my day sucked. But planning that takes the cake over anything I have to deal with. I hate it all for you. But especially for Harlie.
That said, we know this girl and she'll fly through it. It's a super tough surgery, so that means she's at her odd-defying best. It's the routine stuff you need to worry about these days it seems... (haha - trying to provide some humor in a sick, sick way).
I think it's time to discuss this over drinks. Miss you tons, and I know that this is very, very tough for all of your family.
Hugs, my friend!!!!
Oh Christy, my heart aches for you. You and Harlie have had to endure so much and I know every story is written on your heart and on your psyche.
I don't know where you stay when you're up in DC, but if you're not familiar with it, ask about the HeartSong Foundation Condo. I mention it because it made life significantly easier for our family while we were up there and because it may offer you a solution to such a long separation from your boys.
Please if there's anything I can do to help, let us know. In the meantime, please know that we keep you in our thoughts and prayers.
love,
Josie Kurz
Christy and Josie, this is an amazing thing..Heartsong Foundation condo..never heard of till now
"...... Dr. Bear's Den, two apartments near the hospital available for out-of-town families while their child is being treated. The Petrucelli's stayed in Dr. Bear's Den for nearly a month after the fire left them homeless."
http://www.gazette.net/stories/03242010/kensnew211404_32550.php
Thanks Josie.....we may need this too :/
It's a big one that's for sure. But Harlie has done so well so many times, she's a tough cookie, as I like to say. Still, I know how hard it is. I hope you it doesn't weigh too heavily on your mind between now and then. HUGS.
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