Disclaimer

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, April 18, 2012

Cardiologist Appointment

I LOVE going to the cardiologist.  I always look forward to Trey's cardio appointments.  Whether good or bad - I want to know what's going on.  I hate not knowing.  At the appointments I either get reassured that he's doing ok or I get news that something has to be done to fix him.  Thankfully, we've only had 1 bad "appointment" and that was his first ever appointment.  Looking back though, it wasn't really a bad appointment.  The doctor was surprised at how "well" I took in Trey's diagnosis.  The nice thing about the entire ordeal was... ok, so yes, something is wrong and well, this is how we're going to fix it.  Personally I found it so much easier to take in that he had a heart defect than it was to take in that he had Rhinovirus and we just have to ride it out.  It was nice to get a diagnosis that could be fixed.

Trey's cardiologist is awesome.  I don't think I will ever forget meeting Dr. Callahan.  We were at Montgomery General and he came from his Rockville office after hours to come do an echocardiogram on him in the ER.  He was really calm through the whole thing and extremely helpful when Trey became pretty fussy towards the middle of it.  He never seemed to get frustrated with the fact that I just couldn't get him to stop crying and I was definitely getting flustered!  During the echo he talked on the phone with his family, discussing time outs and asking his daughter what mom had said about the issue.  I really liked that he seemed to be a real family guy.  He asked about our family and since then he's called my kids uno, dos and tres.  When he gave me the diagnosis, he gave it to me straight and definitely helped me try and understand what was happening.  I remember him telling me what was going to happen and that when Trey left the hospital he was going to have to take lots of medications for awhile.  I'll never forget just looking at him and saying, "what am I going to do with the dog??  I can't even remember to give the dog her medication!"  That definitely should have been a clue to him that I think a little different than most people!

Needless to say, Dr. Callahan rocks.  The only thing I fear at the cardiologist appointments is that I won't be able to keep Trey from fussing during his echocardiograms.  He's getting older now and a little less patient.  Yesterday he did definitely get fussy and the Wiggles video that was on was just not keeping him entertained.  The next thing I know, Dr. Callahan is dancing (yes, dancing!) in and out of the room to the Wiggles music to entertain Trey.  Trey is my 3rd child - even before this heart thing we've had our share of Dr. appointments and ER visits.  We have never had a doctor dance and parade through the room like Dr. Callahan did... just to keep my child happy!  Seriously, he's awesome.

I do have to give props to his echo tech and exercise physiologist as well.  They also did an awesome job at keeping Trey entertained.  His echos aren't the quickest thing in the world... plus they're not the most comfortable thing either!

Waiting to get set up for his echocardiogram

The beginning of the echo

Waiting for the EKG

All hooked up!

During the EKG

And what you've all been waiting for....


Trey's heart function stayed about the same... even off of the Enalapril and Lasix!  Yay!  Trey is now almost 10 months old (on the 24th) and we are 7 months post surgery.  He is doing SO much better than I could have even dreamed about 7 months ago.  He does have some scar tissue on the back of his heart and his mitral valve is a little leaky but right now those things aren't anything to worry about.  Dr. Callahan did mention that down the road it is possible that his mitral valve could have some issues... but then again, maybe not.  So right now - it's a non issue.  He's doing GREAT!

Dr. Callahan saved my son's life.  There are so many people that have had a hand in saving Trey but Dr. C diagnosed it and has been there with us from the beginning.  The course of treatment Dr. Callahan followed has been ideal.  I couldn't be happier with how things have worked out!!  Thank you Dr. Callahan!!

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