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....

Thursday, October 6, 2011

Day 24 - 4:30 pm - ECHO

We had a much better start to the day today.  Granted, it started off with me waking up to Cole running around the room naked while throwing Trey's clean clothes around, but it was still good and it made me laugh.  Bryce got off to school just fine and I even got a quick word in with one of our neighbors (we have the best neighbors).  

When I got to the hospital this morning Trey was in the middle of his echocardiogram. He was awake, calm and pretty content.  I thought the sono of his heart looked better than the one I saw when he was first admitted.  I was hopeful for some increased function but his ejection fracture stayed the same, about 30%.  Again, ejection fraction measures the % of blood that is pumped out of the heart and tells the doctors how the heart is functioning.  Ideally, it should be between 60% and 70% but not over 80%.  Trey's EF% was 7 when he came into the hospital 3 1/2 weeks ago.  I was hoping for better but definitely aware that it may take up to 2 or 3 years for his function to be completely normal.

Trey getting his echocardiogram

His feeds are now up to 25 mL/hr and he has done well with that so far.  By 8pm the goal is to be at 30 mL/hr and at 35 mL/hr by midnight.  His nutrition via his central line is now completely stopped.  He started oral lasix today as well so if he does ok with the feeding via his tube the central line can be removed in a day or two.  He won't start bottles for another 2 days or so and then after that he can go back to nursing.  They use bottles at first so that they can measure exactly what he is taking in and I'm ok with that.  They weaned his methadone down a little bit today and then tomorrow they will wean the valium dosage.  The cardiologist wants to get another ECHO of his heart next week.  He said that we'll probably go home mid next week so he'll most likely get that ECHO before leaving. If he leaves earlier than that (he was doubtful) then we'd return to his office for the ECHO.


  1. He has such big beautiful eyes. It was so cute seeing him suck on his thumb.

  2. The doctor's told us the same thing about Michaela's EF. They didn't expect it to be normal for a couple of years. On the 18th of this month it will be 7 months since her surgery, and her last EF was on the HIGH side of NORMAL!!! They don't account God's hand in their healing time :) Praying the same for little Trey!!