I am slowly going CRAZY!!!

Today was a waste. Well not entirely but most of it was.

We were SUPPOSED to take Ben downstairs for a Bone scan...he was SUPPOSED to have and MRI and he was SUPPOSED to have 2 sets of repeat labs done.

It is 1730 and he has had 1 set of labs. Yup that's it ONE freaking set of labs!!!!!

The other tests were cancelled. They had Ben fast, had him dressed and changed, a new IV placed and everything. Once we got downstairs the radiologist decided it would be a pointless series of tests since he is so close post op and one set of tests had already been done. So they decided to wait and call ENT. ENT decided to cancel the tests until after we saw ID(infectious diseases)/Immunology.

Once we eventually saw ID/Immunology and they asked the same questions I have already answered  1,000,001 times, they decided.....(DRUM ROLL PLEASE)....to do the freaking bone scan and MRI. However because it was 1530 and Ben had eaten and DI was really busy we would have to wait until tomorrow. So we get to do this all over again tomorrow. Whoop dee freaking DO!

Dr. Mailman (the ID/immunology guy) isn't really sure what is going on. Because bone infections do not behave like other infections (mostly due to blood  supply mechanics) they can fester a long time before a positive diagnosis. He things it is reasonable to assume that this is a real possibility. However no one is jumping to start antibiotics because once started, the antibiotics will be fairly long term. With this carries the risk of Ben having an active C. Diff infection, which to a little guy like him is very serious. So right now they are fighting over how to proceed. Apparently if the tests tomorrow come back inconclusive there is another more specific test that takes 2 days to complete. Not much information was given to me on that but that is another possibility. Dr. Mailman has not ruled out the idea that it could be some other secondary condition to Ben's Pierre Robin. Many of the other conditions cause arthritic changes that could result in the elevated inflammatory markers and would explain his pain. The new things that came up from this consult were as follows;

• Labs to be repeated to follow inflammatory markers, as well as his WBC and CBC results. Urine to be sent as well for testing.
• The bone scan, MRI and possible other 2 day test (that has yet to be named)
• Consult with Cardiology (apparently the inflammatory markers with the WBC levels can indicated heart issues) more than likely tomorrow as it is late now
• Consult with nephrology to make sure nothing is up with his kidneys ( a common problem with Pierre Robin babies) 
• Consult with genetics, again
• Consult pain services to asses pain control
• Consult nutrition services (although not sure why as his weight is great)

So to sum up. I know NOTHING more than this morning. To be honest if anything the longer we are here the more questions that are brought up. Hopefully this mystery will be over soon.

I want to go home :(