We decided that Clarie is going to have a port-a-cath inserted beneath her skin on Tuesday 13. It will be much more convenient than trying to poke her little arms every time we need blood work, which is still fairly often. And the great thing is that nothing will be hanging out, so she can still have all the water fun she wants to! The surgeon who will put it in, ironically enough, is someone we knew from the Children's Hospital in Denver. He recognized us and then I put it all together and realized that's why he looked so familiar! It's a small world. He is very aware of Claire and her history and we feel good about him doing the surgery. ((The way they insert this catheter is basically the same way they put in dialysis catheters......which is how the whole heart episode happened last October. It's never supposed to happen, (and especially not twice with the same patient!) but we'll certainly be praying she doesn't have a repeat of the same issue.)) While she is "under" for the surgery, they will also be taking some photos of the retina of her eyes. It will be good to see how her eyes look now and then take more photos down the road and see how/if things have changes, hopefully for the better.
We're also still trying to work out some medicine issues. She needs one medicine, Bactrim, but this is also the one she had a bad rash with the end of January....but I can't say we're 100% sure it was this medicine that caused the rash.....but it could be. So we may try it again and see if she really is allergic or not. We're hoping she's not. We'll meet with some other doctors about how to possibly "desensitize" her from the med. I don't know how all the works yet, but hopefully we can get something figured out soon.
Benson started another soccer class today and Claire and I got to go cheer him on! All Claire said though was "I wanna play!" She was very understanding (of course) that this was just for brother and soon realized it was pretty fun just to watch all the other kids run around and chase the ball! So fun. Benson said he wishes he could go every single day!!
Hooray for Friday tomorrow. Nothing on the schedule and I'm hoping it stays that way!
Claire put herself to sleep with her blanket the same way she wraps her babies up for sleep!
1 comment:
Seems like WAITING goes hand in hand with anything medical. You have had your fair share of waiting the past few years.
I hope that the surgery goes well. I will keep the little babe in my prayers.
Seems like she is doing pretty well for being so soon after so much trauma with the heart thing and the transplants. What a sweet heart.
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