A Crazy Night!

Sometimes I wonder how or if I will be able to keep my sanity through all of this!  Last night JJ had a minor meltdown and decided to rebel by pulling on the oxygen tubing that is hooked up to Easton's trach.  While I was busy disciplining him, I failed to realize the trach had been pulled out!!  Easton started to turn funny shades of red and purple before I could get to the emergency replacement trach.  Luckily, it was close by!  When I went to put it in, there was no inner canula (the rigid part that fits inside the trach to guide it in)!  It had been cleaned at the hospital last week and they didn't put it back together correctly!!  Trying to put a floppy trach in a distressed infant is not my idea of fun!

The night got better when I decided to "just check" Easton's G tube to make sure the balloon was still properly inflated.  After all of the previous G tube drama, we didn't want any more to fall out.  Sure enough, instead of drawing back water out of the balloon port, I got formula!  I replaced the G tube, only to find a massive blow out of the balloon!  Something is definitely wrong with this picture!  We are seeing the doctor today and will ask that Easton have a pH probe done to check the acid level of his stomach.  If it is very low (very acidic) it could be part of his breathing problem and his bowel problems.  It hurts this little guy so much to poop!  He gets excoriated and bleeding rash all the time even though we are diligent with changing his diaper and putting on $40 butt cream...yes, it's really $40! 

Does the drama ever end??!!