Saturday, December 4, 2010

Better day...

Annabel has had more good moments today and for that we are thankful. So many things are being talked about that my head keep spinning. Also the fact is that a teaching hospital so many doctors come in and out and make changes or have opinions and they just don't all agree.
Seems like the blood infection is staying status quo. We still don't have a culture that has been clean for five days. We have one that hasn't shown growth for two days but the need 72 hours with five clean cultures in a row. Her fever hover most days around 100.5. So I think the antibiotic is keeping it in check. They have taken her off the dangerous antibiotic and now she is on flucanazole (sp.) The plan is that she must have 5 clear cultures then 21 days of antibiotics. At this point we have surgery for her central line on Monday around 1 p.m. if culture wise she is clear. We are hoping to be transfer back to our home hospital and be under the care of Dr. B. If she feels it is possible maybe discharge with our nurses giving the IV antibiotics at home.
Some of the things that we didn't know when we came here were some very elevated levels of bile acids, GGTP, Bilirubin, other words like Bili Conjugated, Directs, etc. Also her electrolytes have been wacky and according to the doctor not in the way they expect. Until I can hear what they are say a few more time I am really confused. I have made notes and i am sure by Monday we will be meeting again. We had a meeting with the doctors last night and talk was about transplants, her not qualifying and what our plans were if these things progressed. Now, this is them talking and me still processing. We know her levels have been changing with the TPN/Lipids but they haven't ever been what they are now. I am praying that this infection just got her really hard and the antibiotic is hard on your body also. If I can I hope to post pictures tonight. The entire family came to Houston and we are having dinner across the street quickly while Tanya sits with Annabel.

2 comments:

Anonymous said...

Once again thank you so much for the updates. Everyone loves her so much, it is great to know how things are going. Your family is in so many peoples prayers.

Edie and Ben

connie said...

Good thing we don't have to understand it all. We just have to pray she gets better soon, gets that new line, and gets back home where people really know her and don't question her need for the same care as any other little one. and also happen to love her and you.