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, August 8, 2012

Cardiologist Appointment - 11 months post surgery

We are 11 months post surgery.  The surgery seems like just the other day... yet, also seems like ages ago... all at the same time.  Trey was a superstar at his cardiologist appointment with Dr. Callahan today.  He's getting so old!  The last time we went to the cardiologist he wasn't moving around, he just sat in his stroller waiting for the doctor.  Today he wanted to play with all of the toys and check out all of the literature in the waiting room!  What a boy... totally drawn to the car magazine!

He had an EKG (which I assume was fine... I didn't ask about it because I'm more interested in the results from the echo-cardiogram!)  and an echo.  He did great with both.  The EKG is pretty easy.  They just stick a whole bunch of stickers on him with leads going to a machine for a few minutes.  I just held his hands and he looked down at his chest the entire time.  Easy peasy.


Next up is the echo-cardiogram.  Those are a little more difficult because they take longer.  We tried to get him to watch an Elmo movie but he really wasn't too interested.  He just wanted to watch the screen of the echo and wiggle around.  He wasn't too thrilled with the gel they put on his chest to get the images.  He wanted to touch it and smear it everywhere.  I was able to hold his hands most of the time but he definitely is a wiggler when he doesn't get what he wants!  Overall he did pretty good for a 1 year old though!

So... for the results.... 

Dr. Callahan took him off his last medication (Digoxin, .5 mL 2 times a day)!  AMAZING!  When we were in the hospital they were telling us to expect him to be on medication till he was about 2 or 3.... one of the cardiologists mentioned possibly 5.  Trey is now medicine free at 13 months old!!  God is good!!!  I have no doubt in my mind that God has great plans for this boy.  

So the low down.... his mitral valve (the valve between the left atrium and ventricle) is still a bit leaky but as of now... not a big deal.... and may never be!  Heck, for all we know, many of us could have leaky valves in our heart and not know it because there aren't any side effects hence no need for a scan.  There is still a small brightening on the back of the heart muscle that shows up in the echo but it seems to be a bit smaller than last time.  This is evidence that there was definitely damage to the heart (cells that died for good) and that will never come back but as his heart grows the new cells should compensate for it.  My assumption is that as the heart gets bigger, this "brightening" should look smaller.

The other news is that we don't have to go back to the cardiologist for 6 months!  We had been going about every 3 months or so on average.  After our 6 month follow-up, if everything is still a-ok, we will go to annual cardiologist visits!  

Trey came off the Prevacid after the last gastro appointment.  She mentioned we could try it if we wanted to to see how he did.  I had forgotten to give it one time and he did fine so I just decided to keep "forgetting" and he did fine.  He still definitely has some reflux... you can definitely hear it... but going off the Prevacid didn't make him any more fussy.  It was one less medication I had to remember to give!  So now we are down to ZERO medications!  I am thrilled.  When we got home I was able to erase the last medication off of his "current medications" form that I keep in his medical binder!!

I want to take this time to thank each and every one of you for keeping us in your prayers.  I feel as though this is all coming to an "end."  I look back on it and gosh, it all seemed to go so fast... although I know that when we were in the middle of it I thought it would never end!  For this to have a positive outcome in just one year though is amazing.  I believe that a large part of him doing so well was from all of the support we have received from our friends, family and even strangers.  Our friends and family have lifted us up in so many different ways.  I've also met so many new people through this ordeal that will forever change our lives.      Thank you all!