Update: One Week at BCH

Author: Chris

Update

At this time last week, we had just hung the phone with the liver transplant team and were making initial preparations for our travel to Boston! Now, Porter is resting and recovering like a champ with a new liver he has had for about one week! He is pretty comfortable, moving off the Morphine and onto Tylenol to help manage his pain. He is only getting 2-3 doses of Tylenol a day at this point. All of us, Porter especially, are starting to feel to stress and exhaustion of staying at the hospital. Porter is struggling to sleep, and the well-intentioned close care of the nurses is, unfortunately, disturbing to his normal routine with blood tests, ultrasound imaging, etc. Plus, the inconsistency of nursing staff means Porter meets at least one new nurse a day. This stresses him the most I think. Hopefully he can settle into a pattern soon.

Did I capture a smile there?

We started feeding Porter today! A slow continuous pump feed ran all day to reintroduce food to his digestive system. We fed him Pediasure, which is a relatively high protein "normal food" and a big no-no for a metabolic patient. It blew my mind that I was feeding him this. All day he had no problems with the food that we could tell.

We want to (again) thank our friends and family who send their support from afar!

The McNulty's sent a killer care package!

UVM crew rocks!

We love (and miss dearly) our PICU peeps!