She had blood work this morning and she hates getting poked! The numbing cream helps, I'm sure, but the anticipation of it all is the worst. Then we met with the doctor later in the afternoon. There are some questions out there about Claire still having an infection in her blood because one of the cultures from her catheter tip came back positive....and also showed it was resistant to the antibiotic she's been taking. Not wanting to get the new port infected that they're going to put in tomorrow, Claire will be given a dose of a different antibiotic tomorrow before they do the procedure just to make she's covered. They want to keep her on that antibiotic for at least 24 hours and it can only be given IV. SO that means we will definitely plan on staying the night tomorrow in the hospital for her to be given a full 24 hrs of the antibiotic. They also decided to draw one more set of blood cultures from her this afternoon (which meant yet another poke (without numbing cream this time)) so we could know for sure if she has any kind of an infection that needs to be treated. She hasn't had any signs of an infection (fever), but it's better to know FOR SURE there's nothing going on that needs to be treated otherwise. Claire's little body usually seems to find a way to make things just slightly more complicated than needs be! She keeps us (and the doctors) on our toes, that's for sure!!
But she looks great, feels fabulous, and wouldn't make anyone think she had an infection.....so hopefully it all comes back negative and we can come home sometime Wednesday.
The surgery is still on for tomorrow to place the port. I'm excited to get it in so she won't have to be poked any more. It just wouldn't be good for her to have to go through that every time they needed blood. It will also be nice because the port can be used for IV infusion as well as for blood draws. Let's just pray it all goes smoothly, without any complications!!
We don't have any more answers about the blood clot in her neck because I haven't spoken with the hematologist yet. I'm assuming we'll have a chance to get more info from them while we're in the hospital tomorrow and Wednesday. She hates the shots in her thighs every night and morning and her thighs are already looking pretty bruised. Sigh.
Claire's other labs look pretty good for the most part. Her hemoglobin (blood level) has come up to where it should be after stopping one of her other meds...so that's very good. Kidney function looks great but that silly liver still isn't quite normal. The numbers went up again this week, but within the "bouncing around" range she's been in lately, so I still don't think anythings going to be done about it. We'll keep watching.
On a HAPPY note, Claire had GREAT bath this weekend!! She still can't submerge completely under the water until the site heals up all the way, but TONZ more fun than she's ever had before!
1 comment:
You guys are amazing. You go through so so much and still keep a good attitude. We'll keep little Claire in our prayers.
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