Monday, October 21, 2013

New line, more TPN

I will get around to posting pictures and a full update soon.  Keegan has been on a downward slope lately, and it just has had me running on all cylinders with no time to get to the blog.

We met with Keegan's surgeon this morning to discuss the condition of his port.  It appears that Keegan is either rejecting his port, or his wound-healing is still so poor that the skin is degrading around it.  His surgeon took one look and confirmed what we were thinking...it has to come out.  He wants a new imaging study before going into the OR, which means two rounds of anesthesia.  It is pretty difficult to schedule these things on an outpatient basis, so it is possible that Keegan will be admitted to have his line replaced.  We should know in the next few days.

The other hit we took this morning was the decision to increase Keegan's IV nutrition by another day to accompany his worsening intestinal failure.  We knew that it would get worse as we continued to wean his steroids, and that is certainly what's happening.  His labs are not looking great, and he is losing weight.  Hopefully, this increase will be what he needs to feel a bit better.

Needless to say, these are hits we were expecting but dreading at the same time. You would think these expected hits would be ones we handle easily.  Unfortunately, they are not.  We appreciate every prayer for our Bug as we turn this new corner on our journey.  I am trying my hardest to get caught up in life and on this little blog.  Thank you for the constant support for our family.  It means the world to us.


1 comment:

Mhauptli said...

I'm so sorry to hear that you didn't get better news today. You guys are in my prayers. Please let me know if there is anything I can do to help.