Ahhh, what a beautiful day! The kids had a half-day at school today. And since Harlie is in the afternoon preschool class, she didn't have school at all. So, after we walked down to the school to get Murphy, we went in the backyard to play.
Murphy took this photo of her...
Notice the clubbing of her fingers. The clubbing is due to prolonged oxygen deprivation. It will never reverse. But I think if she has her next heart surgery, and her oxygen saturation levels increase, then maybe it won't get any worse. Her fingers didn't look like this until June 2009 (when she had her 3rd heart surgery). Then it seemed to happen overnight.
But she doesn't care (yet). She was all smiles tonight.
This is her reading and "doing" the Itsy Bitsy Spider - one of her favorites.
Also, notice her PICC line. She loves the mesh sleeve over the dressing. I think it makes her feel secure that we're not going to mess with it. And I'm so happy that this is our LAST week and that on Tuesday, they are pulling it OUT!!! WooHoo! Then she's going on an oral version of the antibiotic for at least TWO MORE MONTHS! She's already been on them for 6 weeks. That's a long time on antibiotics.
Here's a picture of the antibiotic, aka medicine ball. It is filled with the medicine at the specialized pharmacy and it is really hard. When it is unclamped and plugged in to her PICC line, it infuses the meds over one hour.
Here is the medicine ball empty.
I'm fascinated. It is so cool. And so easy to work with. But, I'm not going to miss it. And I can't wait until Tuesday! The PICC line can't get wet, so baths have been a little challenging. I am so looking forward to not having to worry about it anymore.
Well, that's it for tonight.
Thanks!
Christy
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1 comment:
In all honesty I had to look pretty hard to see the clubbing so I don't think it's so noticeable unless you know what you're looking for.
It's great she's so happy. And I love the Itsy Bitsy Spider, so cute!
I'm excited for you that the PICC line's coming out. But wowza, two more months of antibiotics! That's a serious infection. Harlie is one tough cookie!
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