Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Monday, September 19, 2011

Day 7 - Sunday Update - A day of rest

Trey had another quiet day of resting.  We had visits from Nana, Grandaddy, Aunt Mary Sue and Shannon today. 

Unfortunantely, Trey had some bleeding today and it got a bit out of control between 3 and 6.  Thankfully Hannah, his nurse, and Susie, the ECMO specialist, were able to get it under control. 

The plan is to start weaning him off the ECMO machine starting at midnight tonight.  He is currently at a flow of 100.  They want to be down to a rate of 50 by rounds at 7 am and down to 25 by around 10 am.  At that time they will clamp him to see how his heart does and what his ejection fraction is. 

Around noon tomorrow they are also going to move the cannulas from the ECMO machine from his heart to some arteries in his neck.  If the swelling of his heart is down they are then also going to close his chest.  He is also going to be receiving a new ECMO circuit (the tubing, pump and oxygenator) because there is some clotting in the current circuit.   


  1. Thank you for taking the time to keep us all updated Randi. I am praying for Trey and continuing to send him positive healing energy.

    I think you'll be glad to have this journal to look back on once this is all behind you. Trey will be running circles around his brothers in no time!

    love from California!

  2. Wow! You guys have my thoughts and prayers. My nephew had this same problem when he was born and he is 13 yrs. old today. I know you have a fighter on your hands and with you and your husband's support, he will make it. If you need anything, let me know. Seriously!