Excitedly Terrified

Life has just gotten a little crazier but in a good way.  We had a meeting with Porter’s medical care team and discussed the progress he has made since being in the PICU.  He has come A LONG WAY since being admitted on January 3rd and the docs are amazed.  Quite frankly, they are amazed he is still with us.  They decided to try to see if he would tolerate getting his heart medications through his feeding tube instead of through and IV and so far he has done extremely well with this change.  As far as his sedation, he is finally off the morphine and they are continuing to wean the Ativan and the Clonidine Patch. He remains on the Vent with some pretty high pressure settings and is still getting his food through the NG tube in his nose.  With all of this progress and for the fact that heart offers have not been coming in, the doctors feel that Porter could come home sometime soon while he waits!  We have no defined time on when he will come home and he will remain in the transplant list while he thrives at home.   He will be continue to be on a ventilator and will most likely have the feeding tube in his nose taken out and a g-tube placed as he is not showing us yet that he can actively suck on the pacifier and hasn’t quite figured out the trick to swallowing around the trach. He's working on it though!   We will initially have 24 hour nursing care for him but the hours will taper off as time goes on.  From what we understand, as long as he’s on the vent we will need to have nursing care for him.  He will continue to work with PT/OT and speech therapy either at the house or in clinic and will be making frequent visits to the cardiologist to keep a close eye on his heart function.  While we are excited at the thought of our family being under one roof again, we are also terrified.  


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