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Friday, May 6, 2011

End to a busy week!

Yea its Friday!  I do have today off but I have to work all weekend. 

I went back to work Wednesday.  It hardly seemed like I had been gone for 10 weeks.  Everyone was very happy to have me back!  I am the only one who does my job and though the person who filled in for me did a good job, it wasn't the same as having me do all the work and they are happy I am back and I am never allowed to leave again:) 

Joey had his follow up swallow study on Thursday.  It went better than expected.  He only aspirated once during the test!  We can S-L-O-W-L-Y start feeding him by bottle again, like 5cc per day and work up from there.  He still needs feeding therapy, but that is become a slow process to get the ball rolling on that one.

Today he was suppose to get his g-tube button changed out but Summer had a mother's day program at school so I reschedule the appointment for early next week.  But Wednesday night was one of those nights were he was up almost all night was worse when we hooked him up to the pump to feed him and we were worried something was wrong with the g-tube.  So we called the doctor on Thursday but he was in surgery all day but they fit us in on Friday so Joe took Joey to the doctor while I went to the program at Summer's school. 

The Surgeon said the g-tube site looked great!  Better than kids w/o EB!  He removed some more granulation tissue and replaced the Mickey Button (they need to be replaced 6 weeks after surgery and ever 4 months or so from here on out)  He thinks the pain is from nerve ending growing back.  It makes sense; i have similar pain from my c-section incision.  Unfortunately there isn't much we can do other than try to comfort him when he is being feed.    At least there is nothing serious wrong with the site or g-tube itself. 

That is about it for us.  Have a great weekend and Happy Mother's Day!

1 comment:

  1. Poor little guy! Glad he's doing a little better.