Trying to live it up, sort of?

Well, our summer has been slipping away thanks to too hot weather, antibiotics that say to stay out of the sun, drains, infections, etc.  Disappointed doesn't even begin... Summer is supposed to be fun, when you can get out of the house and well... get out of the house!   i'm glad we got a lot of great weather this spring and had a lot of good times.

Then i remind myself he's supposed to have surgery in 12 days... at this point it's been pretty much off my radar!  (How is that possible?)  i can't even tell you what the next 12 days will bring.  We have plenty to sort out by then.  First, we can't get his regular trach size in, and after a terrifying change that ended up in one button short of calling 911, we're not going to try again until a pro has put it in and he site is stretched out.  There's some tissue on the inside of his airway that needs removed (in that surgery in 12 days), but that shouldn't be causing this much trouble... so we're not sure what is.   After consulting with the ONE person in this state i've been in contact with that has a child with LM, we hopefully have a local ENT that can help.  Second, we have this stupid infection.  His primary doc in Cincy wants to see how things are at the end of this course of antibiotics before we proceed with the i.v. vancomycin.  At this point, the director of the clinic seems very sure this is the way to go.  So we'll be down in Cincy Thursday or Friday if we can get in, and may be staying for a good long while.  From my non professional point of view, the infection is still here. 

There's no telling what the plan is... he'd need to be inpatient for a few days, probably, but we have to figure out if we can do the infusions here or if it would be easier to try to do from Cincy at the RMH (not to mention the surgery would be in that time span... don't worry, i'm confused too!).  Hopefully we can get into the RMH if we need to, because we need to be able to have a plan...  There's a lot up in the air, and that's an uncomfortable place to be...

(And remind me, never blog at 11pm..  even after a few changes this morning, that was a terrible post!)