Post Surgery Day 27

We left Ellie last night asleep, swingining in her swing and I found her in almost the exact same position when I arrived this morning.  The swing, and any type of movement, along with music, are magical for her.  She seemed a little happier today, but is still not herself.  For a while this afternoon she actually stayed awake for a while without getting cranky, showed signs of  some playfulness, and fell asleep in her crib instead of the swing. 

Ellie had a pretty busy day today.  Her favorite speech therapist, Melanie, came by to feed her this morning.  She had some applesauce and was actually grabbing for the spoon but it all came up later on.  Because of some "junkiness" that was heard while she was eating they decided to do a swallow study to see if she was aspirating again.  The swallow study showed that she did okay with her eating, she didn't aspirate until she had liquids but even then she responded with a cough this time.  Last time she was aspirating it was a silent aspiration and she wouldn't show any signs of it.  She was able to drink from a bottle and it just goes to show that the low fat formula is really nasty and Ellie doesn't like it.  Hopefully we can get it thickened and flavored for her so that she can have it like she has in the past.  Ellie has been throwing up after all of her oral feeds so they need to figure out why she is doing that.  It could be a variety of reasons from reflux, nausea as a result of withdrawals, and who knows what else but something is not right with her system. 

We came back from fluoroscopy and Ellie had a little bath.  After all the food that has been all over her and having the IV taken out of her head, she was really crusty and sticky so much that her chin was stuck to her chest!  I wiped her down, washed her hair, changed her diaper and then she was ready for some physical therapy.  These past 4 weeks in a hospital bed haven't allowed Ellie much movement.  She has become weak, her hips were a little tight, and if she wasn't delayed before her surgery, she has definitely fallen behind now.  We can expect her to go have some early childhood intervention to help her get back on track. 

I asked the nurse practitioner what the criteria was for Ellie to be able to go home.  She has to get her chest tube out (which will probably come out tomorrow), be able to eat (and hold it down), and be at a comfortable state with her medications.  So...a few more weeks?  Days?  The answer:  We are past weeks and looking at days now.  Hopefully she wasn't thinking like 14 or 21 days but rather less than a week.  It is so hard to know with Ellie - she is so unpredictable even at this young age.