And so it goes...

So really, I feel like we are in a soap opera or some kind of alternate universe here.  We're frustrated, concerned, and left sitting here with no answers.

At about 6am the resident that we've been working with came in to let us know we were scheduled for a 5pm surgery time, also making us aware of what we know very well, that it could change at any time.

Then at 8am a nurse we've never met comes in to bring B a tray of food.  Of course as soon as she brings it in I let her know that he is NPO and can't eat or drink.  Her answer "not anymore".  She doesn't give us much information, only telling us that his numbers are going down and they are not doing the surgery.

WHAT?!?!?!?  What happened to the urgency?  What happened to the fact that his bile duct is leaking toxic bile into his system?  What about his temperature of 103.5 from yesterday?  What about the fact that between yesterday and today his bilirubin only went from 11.3 to 10.8 and is still nowhere near the 6.5 he was at two days after surgery?  What about the other problems the doctor noted from the u/s yesterday?  What kind of tests do they plant to do to verify all of this?  

So I, well we, are completely frustrated.  I mean yes, we would love for him not to require surgery after his body has already been through so much.  But NOT at the expense of his health.  No we don't want to have to have surgery, but we want him healthy!  I'm just floored about this response, and about the fact that they didn't send in someone knowledgeable that could answer our questions to talk to us about this.  I know they will, but until then we have to sit here and wonder about what in the world is going on.

And that's all we have.  Lots of questions and no answers.  He still is very jaundiced.  His numbers are still much higher and more abnormal than they should be after surgery.  He's still got plenty of drainage to where they keep packing on dressings that he keeps soaking through.  

B just asked me, "are we so hardened by our experiences that we can't take good news"?  We hope not, and we don't think that is the case here.  He is slightly better today than yesterday, that's all they have.  He was also NPO and couldn't eat or drink all day which I would assume would reduce bile in the system.  And he's still nowhere near the normal bili range of under 1.  

I don't know what to think.  Right now we're just trying to remain patient until the doctor comes in to talk with us.  We've written a list of questions that we plan to ask when they come in.  Hopefully they can clear some of this up for us.

Will update as soon as we have one...