A Heart Update

Today we finally met with cardiology to go over Sam's Bubble Echocardiogram.  I was really apprehensive about meeting this new doctor but I was pleasantly surprised.  He is very quiet and methodical which I didn't mind.  At first, I thought he was too quiet and too methodical but towards the end, he laughed at my poor attempt at humor and that's when I felt we made a connection.

To begin with, I was having a hard time staying the moment.  My mind kept wandering and I had to keep re-focusing and remember all the questions I had for him.  As usual, things never, ever go according to my plan.  If things had ever gone according to my plan, Sam would have had surgery in December to fix the 'hole' in his heart.  That's all I wanted, just a hole.  I didn't really care how big of a hole, just a hole is what I wanted.  After today, I feel confident that there is not a hole in Sam's heart.

So, what is wrong with Sam's heart.  Let's talk about the easy things, like what's right with Sam's heart...Nothing.  Okay, that was easy.  Ugh...everything is wrong with Sam's heart!  He even failed the EKG. The rhythms on the EKG in December were normal, now they are not!

I'm kind of mixed up between frustrated and anxious so here is my lame attempt at explaining what is going wrong.

The main problems are as follows:

Building pressure in his right chamber
Building pressure in his lungs
Mitral and Tricuspid valve regurgitation
Aortic insufficiency

The Cardiologist believes that Sam has one of two problems, or quite possibly both problems.  He thinks that because the bubbles from the bubble echo crossed over to the right chamber after the 5th beat of his heart, that the shunting of blood is happening somewhere outside of his heart.  This would be a sign of pulmonary AVM's or lesions or fibrosis building up in his pulmonary artery.  This creates a narrowing of the artery and blood gets backed up.  In addition to this, he thinks it is very possible that the pulmonary arteries are hooked up to the right side of Sam's heart instead of the left and this would explain the increased pressure in his right chamber and dumping of oxygen in the right chamber instead of in the left where it belongs.  This would also account for the building pressure in his heart and lungs and the regurgitation of the valves.  All of that is caused from the building pressure.

The second scenario is just plain and simple Cardiomyopathy, or failure of the heart muscle caused from fibrosis.  The fibrosis gets in the valves, the arteries and veins and won't allow the valves to close properly and blood backs up.  The fibrosis eventually blocks all of the veins and arteries from the heart to the lungs and organ failure results.

The third scenario is that both of these are happening...bad plumbing and fibrosis.

Then, there is the issue of the electrical impulses that are quite elevated from the EKG today.   He's not really sure what is causing that.

The plan:

He wants us to go down to University of Utah and have a cardiac MRI.  With this kind of MRI, they can actually, rebuild his heart in 3D and look at all the tissue, veins and arteries.  It is the most thorough of tests.  The cardiologist who read the initial report wanted to do the Transesophageal echo but this doctor said that often misses the kinds of things we are looking for.  This test will be more comfortable for Sam but way, way more money!

If he has option 1, the veins attaching to the wrong side of his heart, they can fix that with surgery. Not an easy surgery but it can be done and has been done.

If he has option 2, nothing can be done and it is a progressive heart disease that will eventually lead to failure of the heart and lungs.

I guess I don't need to explain what happens if he has option 3.

As for the electrical problems that showed up today, he told Sam he has to curtail his physical exercise at least until we get this sorted out.  He said, "This is the kind of pattern we see in kids who drop to the ground playing basketball."  I really liked how this doctor avoided the words 'death', and 'attack'.  Those are all too common words used in relation to heart problems.  He could have used those words at least a hundred times today.  He did say, he hoped that Samuel 'giving out' while doing his sports was unlikely, but if someone came to him to tell him that it happened, he would have believed it.  So, that was kind of a mixed bag of unhelpful information.

I have been so busy today and this evening that I haven't really had time to process it all.  The feelings are all so distant right now since I've been so preoccupied with other things.

Sam's been really quiet since we left the hospital this afternoon.  He wouldn't talk to me and what he did say was full of sarcasm and sharpness.   After young men's tonight, he came home and sat down on the couch, reached his hands up over his head and said, "Mom, I just can't take anymore."  It was just matter of fact.  No emotion, no anger, no sadness...just...I can't take anymore.

"I know."  That was my lame response.

I know the sadness will hit in just a few short hours when I finally try to go to sleep.  This is a very grim reality.  One I have known we would face at some point but had hoped we could avoid.  These sorts of things happen to other people...not us!

Sam's been home from school today and will be tomorrow and probably Thursday too!  On Monday, he had a teacher chew him out for being at school with a cough.  He missed all of last week and half of the week before because of this crazy virus. A cough can last weeks more!  Even kids in the class were bugging him because of his cough.  We don't need this attitude from people on top of everything else going on so he's not going to school until maybe next week.  That sucks because it means I have to help him get caught up and I am behind on my own deadlines of work!

The Cardiologist suggested this afternoon that his pneumonia is back!  So, off we go to the doctor tomorrow!  Then another doctor appointment on Thursday for him and hopefully University of Utah next week!

I'm tired.  I am really, really tired.  Not just physically but emotionally as well.



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