I apologize for my lack of communication over the past few days.  It’s been difficult for me to write for various reasons but here’s the latest.  

Allie’s working very hard to build her strength up which is not only important for maintaining her current status but will be very important post operatively. She was able to take steps in place at the bedside yesterday. It takes an Army of people in place around for her to do these things in order to watch all her devices, esp the 2 ECMO cannulas, but the staff here is very invested in helping her. She is the first person at UPMC with a femoral ECMO cannula they’ve gotten out of bed but most of the staff are on board, here is Allie being a trendsetter.  They had to stop her tube feeds for a few days because of abdominal distention which has been plaguing her on and off since being vented.  A larger NG tube was placed down her nose into her belly and placed to suction to decompress her stomach.  Once they did that, she discovered she was GI bleeding. The blood is old they’re removing and has slowed down with medications to protect the lining of her stomach, and other meds have been added to increase the activity of her gut. They’re restarting the tube feeds today slowly but her abdomen is still very distended. One of the docs said if her gut further slows down it could negatively impact her transplant listing so that had me worried but her surgeon Dr. Sanchez helped put things back in perspective for me. She’s received 2 more units of blood since I last posted, that put the color back in her face. She’s having less hemolysis in her urine, another good thing.  Her vital signs are thankfully remaining stable. There have not been any changes in the ECMO or ventilator. She’s much more alert and interactive. She doing amazingly well with accepting the fact she has a trach in place and knowing this is a temporary thing until she recovers after surgery.  

Nearly 2 weeks since we arrived in Pittsburgh and my emotions have been all over the map.  This is such an emotional roller coaster and we’ve been told we haven’t gotten to the hard part yet, which comes in the days after transplant.  So we continue to wait for the call.