Monday, March 25, 2013

Medical Updates and More!

Morning!  I really thought that I had posted prior to this, but I guess I haven't!  I have wonderful news to share.

On Tuesday March 12, we had Sully's big cardiac check up.  I didn't sleep for the nights leading up to it and I was pingy all morning.  I had to have Robert drive.  We were checked in and we waited for our names to be called.  Sully's cardiologist was just getting in as we were in the waiting room and he stopped by to sneak in a quick hug.  He was so excited to see Sully!

We had the echocardiogram first, and then we would talk to Dr. V.  There was a patient that was running late so everyone was behind.  When the echo tech came in, I recognized her as one of my regulars when I waitressed during summers in my younger days.  We were both glad to see each other. Luckily I had downloaded "The Lorax" to my Nook for Sully so we fired that up so he would lay down for the echo.  As she started to move the wand around on this chest, I could see her start to make weird faces.  Now, this of course made me incredibly paranoid.  Her face kept looking strange, and then she got up and said that she had to check with Dr. V.  I was in near panic mode, and bracing for the worst.  She came back in and said Dr. V wanted a few more pictures.
Afterwards, my anxiety level rising, Sully was toddling around the halls in his diaper and flirting with all the nurses.  He ran into an office, and when I went to get him, I realized he had found Dr. V's office!  Dr. V picked him up and sat him on his lap and said, "All right Sully, let's review this echo, huh?"  We chit chatted for a few minutes while he reviewed the echo images and then said to Sully, 'Well, let's go tell your parents the good news."
We walked down to the room where Robert was waiting, and that's when we heard the news I have been praying that we would hear.
The reason why the tech was looking to funny is because in the report she got prior to doing the echo, it told her to check on Sully's TR Gradient.  Essentially, Sully has some leaks and the TR Gradient measures the severity of the leaks.  Well, Sully's leaks have miraculously closed up, as has the hole in the top of his heart.  There is really no explanation, it has just happened. :-)  The tech couldn't find them and was confused.
Also, we were able to STOP THE MEDICATION!  For the first time in his entire life, Sully is on ZERO meds.  Nada, nothing.  In fact, Sully is doing such amazing things, and the surgeries haven't seemed to phase him, they want to use his findings to show other parents that a normal life can happen!  CHDs are not the end all of a life.  Sully is basically in the 1% of outcomes.  He is the exception to the norm, but I already knew that. :-)  With the exception on more surgeries to replace the valve when he outgrows them, we are completely "normal."  I can't even believe it.
Dr. V hugged us and told us what an amazing job we are doing. I was able to keep myself composed until we got out to the car, and then I totally lost it.  I have been praying about this and dreaming about this, and now it is finally a reality.  I called our parents and they all cried too.  Sully is our little miracle.
Here is a pic of Sully and Dr. V:

Buh Bye medication!

How amazing is that!!???!?!?!?

And for me and my odd belly mass; after a CT scan, and about a billion doctors appointments, we discovered that the mass is a mass of scar tissue from my previous abdominal surgeries.  I guess it is rare that the tissue forms a mass, so lo and behold, it happens to me.  Long story short, there isn't anything I can do about except for maybe more surgery, but then it would lead to more scar tissue, thus making it moot.  Oh well.  At least it isn't something worse!

Also, we are bringing the donations to Ronald McDonald House this weekend!  I'm so excited!  The inaugural event for Project Heart to Heart was great!  I'm so proud of our family, friends, and community.  When I get a final total, I will let you guys know!  Here is a news story that ran in the paper this weekend:

I will leave you with some adorable pics of my favorite, healthy boy!

Picking out desserts with his buddy!  (Sully is in the gray)

Getting caught attempting to scale the baby gate..

Playing with his new manly kitchen:

Walking with his Daddy in the snow like a big boy:

Being silly with Bailey cat:

My favorite Easter bunny:

Happy Monday!


  1. Please tell me when did Sully grow up into such a big boy? Oh my gosh, he is so darn cute! I'm amazed and so blown away that his cardio appt was so awesome. WOW! He is such a miracle and little fighter! So thankful that he is off all of his meds and thriving!