Surgery tomorrow.. uncharted territory!

“Never a dull moment” is our forever phrase!  Porter had a cardiology appointment bright and early this morning.  Nothing like being woken out of a deep sleep to get poked for a blood draw, echo of his heart, and and ekg.  He was extremely fussy and crying during his EKG, and towards the end I noticed something coming out of his ear.  At first I thought it was a little part of one of Oliver’s legos but then I thought it might be his tube.  It was too big to be the tube and looking closer it was bloody and gooey.  Luckily he will be seen by ENT at UNC tomorrow because no one from ENT was at Duke today.  The cardiologist scooped out the “goo” and took a look in his ear but didn’t really see anything.  

Porter’s echo looks good despite the damaged Tricuspid Valve.  The good news is there is no change in the valve so everything seems stable at this point.  They would like to do a cardiac cath in May which of course makes us very nervous but the cardiologist said they would use echo while performing the procedure to make extra sure they can see where they are going in.

We met with a dietician at Duke today to who is going to eliminate the 4am feed and add that volume to his food throughout the day and also increase his fluid intake as well.  His labs showed he is a little dehydrated- not terribly but he could use a little extra fluid.

Porter goes in tomorrow for his Orchiopexy (the search for the long lost testicles) and to have ENT examine his tubes.  It is supposed to be an outpatient procedure and we are ever so hopeful it is.   He is scheduled to get his cast off on 4/6 and then will have a little boot for two weeks - probably the tiniest little boot you’ll ever see!  Once his cast is off he’ll also be able to try out his ankle braces (SMO’s) to make sure they fit properly so he can really start working on his standing and walking.  Porter is making more and more letter sounds and attempts at words everyday!  He really wants so badly to talk.  We have been approved to increase speech to 3 times a week and have a new OT who is working mostly on his oral feeding.  She just started but has some good ideas in place.  Our biggest concern is his oral aversion and trying to figure out if he's being stubborn or afraid.  Stubbornness doesn’t run in our family at all…. “sarcasm” so it just can’t be that!  We needed the feeding therapist last night just trying to get Oliver to eat three bites of a green bean!!  

Porter has figured out how to get from sitting to laying down all on his own!  He does a sort of yoga move to lean forward to the ground and gets his legs out and rolls.  It’s super cute.    Will update when surgery is over and we see how he's doing. 


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