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....

Wednesday, September 12, 2012


1 year ago today at this time (about 7:15 pm) Trey was being airlifted to Inova Fairfax with a diagnosis of probable ALCAPA.  1 year ago today at 10:30 Trey had his last fit of respiratory distress.  1 year ago I called the pediatrician to see if she wanted us to come in early for our checkup, I had been able to get him breathing again but I was a little concerned... she told me very bluntly, call the ambulance.  1 year ago today we were rushed into the ER at Montgomery General and Dr. Gebru looked at me in shock, wondering what in the world we were doing back there.  1 year ago he called Dr. Callahan to do an echo on Trey.  1 year ago today Dr. Callahan looked at me, told me his diagnosis and I said...

"What am I going to do with the dog?!"

1 year ago Trey was diagnosed and our entire life changed.  Diagnosis Day, or D-Day, will forever be burnt in my memory.  It was such an odd day!  Almost so much that I look back on it now and it was almost humorous.  So while it's a day that forever changed our family... I don't look back on it in a bad way.  Yes, I so wish Trey didn't have to go through everything he went through.  I wish he could have been happy and healthy from the get go, but goodness I just have to laugh at it all a bit.  For example, the poor boy was in respiratory distress and I just calmly was able to "pat" it off and he calmed down.  I then called the dr very calmly and explained the situation... I seriously believed his breathing episode was due to the rhinovirus they diagnosed him with at Children's.  It's just so shockingly funny to me that I behaved that way.  

I remember the Dr. Callahan explaining what was going to happen.  That he had to have surgery.  In my mind I was thinking... oh, crap... it's the beginning of school, we have a ton of stuff going on and now I have to fit in cardiologist appointments AND a surgery?  When in the world am I going to schedule this stuff.  Totally not realizing that we weren't leaving the hospital.  HA!  In my mind we were going home with him first!  In my mind I was also thinking - no way, I can hardly remember to give medicine to the dog... how are we going to remember the dog's medication AND the baby's extensive list of meds he was telling us we'd probably come home on.  

While I was being told the diagnosis, David was teaching his first class of the year at Johns Hopkins and too funny.... there was NO way of getting a hold of him!  My in laws were on vacation!  I had to call them and tell them what was going on.  I had no idea how to tell either of them, my husband (when he finally called after class) or my inlaws, what was happening.  I had to look at the nurse and ask her what to say!

Earlier that day... I actually told David not to come up to the hospital!  I totally figured it was that darn cold rearing it's head again and that we'd be fine up there without him because heck, we'd probably be discharged soon anyhow!

After I called the ambulance I ran out of the house to my neighbors and banged on the door.  By this time Trey was vomitting a bit so I was holding him upside down (I just figured it was because of mucus in his stomach or something) as I ran.  I had needed someone to watch Cole while I went to the hospital and as I was explaining to them what was going on I look over to see Cole just walking out the house (still in his PJ's mind you) towards the street.  Yup, totally just left him in the house by himself.  

There are so many other little things that happened that day that I just chuckle at.  It was just an  o d d  day.  

On the other hand, my heart overflows to everyone involved in that day.  We are SO lucky to have such a great support system.  Not only family and friends but doctors and nurses as well.  God truly placed the right people in the right places that day.  

Dr. Gebru... the pediatric ER doctor
Dr. Patrick Callahan... the pediatric cardiologist
The pediatric ER nurse (I can't remember her name) that was there that day AND the day we 1st went in
Tracey Douglas... an ER nurse
Dr. Futterman.... the PICU dr. at INOVA that admitted us
Savannah.... the PICU nurse that took care of Trey that night
Jackie and Steve... my neighbors that watched Cole pretty much most of the day
My parents... who came right away to watch Bryce after school
My in-laws.... who cut their vacation short to come home and help
Jenny... my friend that I texted non-stop to throughout Trey's entire ordeal.  When we went into the ER the first time I knew I needed someone to pray for him and us.  She's the first person I thought of and I texted her right away.  I don't know why she came into mind right away but she did and I have no doubt in my mind that it was God telling me that she would be my prayer support... and she has been. 

So this day has been interesting.  It's been spent both laughing and crying.  My heart hurts at times because I have SO much gratitude to the people that saved my son.  I just can't thank everyone enough.  

I'll leave you now with some cell phone images from last year.  In the first he is being prepped to be air lifted to Inova and the second picture is him soon after getting to INOVA.  

... and here he is today!

P.S.  By the way, our dog was diagnosed with Cushing's Disease 2 weeks ago.  The entire thing just is so ironic.  Trey finally is off all medications... and the dog has to go on more!