We thought Porter would be going back to UNC this week but last week he wasn’t handling his food very well so that plan was set back a couple weeks.  They have started working their way back to feeding him over 30 minutes and so far he has tolerated his food over 4, 3, and 2 hours.  

He hasn’t seemed like himself over the last 3 days.  He’s been irritable, sweaty and has had a lot of secretions.  He’s also having some irregular rhythms and a lot of PVC’s (premature ventricular contractions).  They said today that they aren’t too concerned with the PVCs if his physiology hasn’t changed but he is definitely more agitated than we have seen him in a while and he has been off all of his sedation meds for a little over a week. They added some Potassium to his formula this morning because it was a little low but that didn’t solve the PVC issue yet.  They will add some more tomorrow to see if that helps.  

Steve and Oliver are heading home in a couple days but Porter and I will be here a little longer.  We’re all a little nervous to go home and find ourselves back in the same situation again a month or two from now.  Our cardiologist here said she was worried that we will get home and be back in 6months.  UGH   

It has been great spending time with Oliver and Steve and will be sad to see them go but hoping we won’t be apart too much longer.  Oliver has been great and we’ve been able to do a few fun things with him but he is ready to go home.