No More Epi

Owen had another stable day.  I think we finally have the pneumonia under control.  He will finish two antibiotics tomorrow and then he has one week left with the inhaled Tobramycin and Meropenem.  If all goes well this next week, he will be relisted as 1A on the transplant list Fri the 17th. 

 

Meanwhile, we are working on nutrition.  We need to get about 2300/cals a day into him for optimal growth.  If we feed him around the clock, that means he needs 71cc (a little more than 2oz) of food an hour for 24 hours.  We tried today at a rate of 30 and he was fine, so I bumped him up to 60 and he was miserable.  He felt nauseated and so sick to his tummy.  At home I just let him eat and would supplement with bolus feeds as necessary.  It's going to be hard finding a balance.  With a failing heart, the gut takes a big hit.  Pray that we can find a way to get him proper nutrition without making him feel awful.  He is getting a whole organic real food diet (quinoa, beans, nuts, kale, ect) so no added sugars or junk in it. 

 

Another biggie for the day was that we weaned him off EPI!  His HR dropped down to 140 and he is resting comfortably.  So now we will work on weaning Dopamine next.  He is still critical and on SO many meds, but we are learning what his new baseline will be while he waits for his heart.  He will never recover to where he was before the cardiac arrest and that's okay.  We will keep him in CVICU, healthy and strong while we wait for his new heart. 

 

Today we played Legos, watched Spy Kids, drank liquids with OT to ensure there was no aspiration, and we got out of bed to stand on a scale.  Huge milestones!! 

This little monkey played in the bathtub at Auntie Sussy's house. :)

Baby steps forward!!