Where to begin???

I've started to type this post several times and deleted it... not really sure if its because writing it makes it seem more real.  Or maybe it's because I feel like I have told the story multiple times today and I feel like a broken record.  I definitely want to keep a record of the going-ons during these times...

Barrett had a well-check recently and the doctor heard a heart murmur.  In most cases, murmurs aren't anything major, but they wanted to get it checked out.  We had an appointment today to have a sonogram of Barrett's heart.  He did well for the first 20 minutes, but then he got squirmy.  The sonographer was very patient, but at this point, he looked at me and Bonham and said, "It's important that he stay very still, so that I can see this.  I see something that is minor and something that is more than minor..."

The sonogram went on for another 20+ minutes.  Initially, we were told that it would be a few days before we would hear the results, which normally means that there is nothing wrong... the sonographer said that he would have a cardiologist come back and talk to us before we go home.  We were told that Barrett has a small hole in his heart that they won't be able to fix it - this is considered minor.  He also has a narrowing aorta.  This is not-so-minor.  Based on what the doctor said, he has had it forever, but no one has caught it in the past.  Barrett really doesn't go to the doctor much, so it would make since that there haven't been a lot of opportunities to hear it.  They complimented the doctor that did catch it, because it could have easily been missed again.

The narrowing aorta basically restricts blood flow to his lower body.  It also causes high blood pressure in his upper body and low blood pressure in his lower body.  The surgery will expand the aorta, so that the blood flows evenly. 

Since he has lived with it for 4 years now, it wasn't considered an emergency, but they told us that they don't want wait too long to get it done.  We are waiting for a call to schedule another scan, because they have to check some of the surrounding ventricles.  This additional scan will help when they do the surgery, so they know if any additional repairs are needed.  It should also help the surgeon decide if they are going to do the incision down his chest or on the side (through the rib cage).  We should be scheduling the surgery before the end of October. 

We had a lot of questions for the cardiologist and we will have more for the surgeon when we meet with them.  They gave us a lot of information and I don't know that we retained it all....

Barrett will have to stay in the hospital from 7-10 days.  This part caught us off guard a little.  They were throwing around time frames of when things would happen.  The doctor said most kids are up and around in 2-3 days, but that with the blood pressure issues, they will need to monitor him a little longer.  He will go for a check-up a few weeks after surgery and then at 6 months and at 1 year, and then every year after that.

For the most part, Barrett should be fairly normal after surgery.  The repairs should grow with him and in most cases, no further surgeries are required.  I'm sure that we will get more information in the coming days, but right now we are just dealing with this new information.

Because of Barrett's lack of doctor's visits in the past, he doesn't do well at appointments.  This is going to be a major hurdle for us, I know.  We have had incredible support from our family and friends.  Please keep sweet Barrett in your prayers.

Getting his blood pressure taken

Being a trooper (at first...)

tough to see what this really is, but it's part of Barrett's heart

This is the diagram that they gave us.  The part that you can see has some white-out is where a normal aorta would travel.  Where you see the drawn in portion is how Barrett's is... this is what is restricting the blood flow. 
The mark on the lower part is to show where the hole is... they are not going to repair this, because it's so small.