Monday, April 27, 2015

In typical Abby fashion

This morning, Abby was in so much excruciating pain that she just sobbed and couldn't even stand by herself for a minute.  The OT was really concerned that she wasn't making a lot of progress.  

Fast forward a few hours to when the PT came in.  Abby got out of bed, took a few tentative steps, and decided to walk halfway around the unit to the playroom.  That's so Abby!!  :)

She's still needing a strong hold on my hand, but this is a HUGE step for her.  The playroom is so motivating!  We were going to walk back there tonight, but she fell asleep in the middle of putting a puzzle together with me!  I think she's probably out for the night!

The pain team is in the process of transferring her over to oral pain meds now that she is getting more food in her belly.  I'm encouraging Abby to eat preferred foods and just putting the pediasure through her tube for now.  I have learned that pushing the pediasure too soon will cause her to be completely turned off to food completely.  

She is still sleeping on cpap and showing that she needs it.  The pulmonologist doesn't want to ake any major decisions about her future with cpap until her pain meds are decreased, but he warned us that there is a good possibility that Abby will go home with it--maybe short term, maybe not. If it's only at night, it won't affect our day to day life too much except that she won't be able to spend the night anywhere while she is on it.  Cpap really isn't what we want, but I just go back to we've done a trach and a vent.  We can do this!  

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