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....

November 17 EF%

None of us!!

Isn't that number amazing?!  Isn't my kid amazing!?!  In 3 weeks and 2 days his EF % has gone from about 30% to within normal ranges!  Seems a little unbelievable but I'll take it.  All those prayers out there have worked!  Remember though... that's a normal EF% while on a good amount of medication.  Dr. Callahan is keeping his Digoxin and Enalapril doses at the same so basically, as he gains weight the amount he gets will be the same but the dose will be less effective since he weighs more.  He is having us come back on January 24 (TWO months!) and we will see how he is doing then.  So the next hurdle will be seeing how he does on the less effective meds - I assume that it's possible his EF could go back down a bit at that appointment.  My hope is that it will be about the same.  That would mean that his heart is actually recovering and he can further wean on some of the medication.

Side note.... Dr. Callahan... I was in such shock over the good news that I didn't think ... of course when I got home I had some questions.  Can you email me at treyheart@gmail.com and let me know the best way to contact you with my questions (email address?... I have such a hard time getting to the phone with having Cole around - now that he's pulling out the feeding tube I don't take my eyes off of them!)

And yes, you read that right... Cole pulled Trey's feeding tube out yesterday.  That was lots of fun.  It was before Bryce went to school and I thought Cole was in the den with him watching him play a computer game.  Well, he snuck into the bedroom while I was indisposed and I didn't see him.  The next thing I know.... Cole is walking into the bathroom with the feeding tube dangling from his fingers.  Trey was in his swing behind my bed (we had just woken up) and he didn't make a peep.  Poor kiddo!  Although on the other hand... maybe I should have Cole remove it when we need to change it next because Trey didn't even cry when he did it!

Feeding tube - not in Trey
Tube / Tape burn

Tomorrow we have our appointment at the Gastro Dr., Dr. Louis-Jacques.  I'm hoping to figure out the throwing up thing and the feeding tube issue. We did start Trey on Zantac last yesterday and I'm not sure how long it takes to become effective.  I know when I had reflux when I was pregnant with the boys the Zantac worked right away for me.  I'll post an update about his appointment tomorrow after David and I go out to dinner to celebrate T's new EF% and after I go food shopping for Thanksgiving (I skip the crowds and go Friday night.... then I'll go back on Monday morning for produce).



  1. Awesome report!!!!! God is so good and faithful! So glad to hear the great news and to hear the joy in your writing. I know you needed some GOOD news, Randi. We are still praying and my Bible study gals are continuing to pray as well. Have a great weekend celebrating! :)

    Deanna and Dan

  2. Fantastic!!

    Just for comparison Em's EF is 50% and that's the highest it's ever been so way to go Trey!

    Jackie x

  3. What an awesome update! I'm so glad to "hear" you smiling. I know you are still muddling thru feeding issues, but sounds like overall, things are in a much better place. I am so impressed you are hosting Thanksgiving with everything that's going on...not surprised though! Have a wonderful holiday!!

  4. So glad for the good news Randi we are still praying!

  5. Trey is such a cutie pie!! Thanks for sharing this with me!! Dr. Callahan is also Mikal's doctor. Continuing to pray for Trey, you & your family!! Awesome news!! God Bless!