Having a child who has multiple serious heart defects that WILL get worse and it's just a matter of when, tends to make me think in different terms than most. Before I take Eli to the cardiologist I start thinking "I hope it's not....." or "if it's going to be anything let it be......". When I say things like this people think it's me just being pessimistic. Nobody wants to have things get worse. Everybody wants things to get better. But when the fact is you eventually will get the dreaded news of "surgery" you start preparing yourself.
So shortly after Christmas we began seeing changes in Eli that could be his heart. However, we couldn't jump to conclusions and assume it was his heart. Afterall he's going to have normal kid things happen too. I was just watching him as I always do to see if they go away. I was doing rather well until my husband noticed Eli's neck turning blue. It was only his neck, it wasn't all the time, he had no other emergent symptoms and it only seemed to happen when he exerted lots of energy. And as always we had other people see it just to make sure we weren't imagining things. Of course this magnified my already normal anxiety before our cardiology appointment. So of course I started in with my "I hope it's not....." and "if it's going to be anything let it be......". This appointment couldn't have come fast enough.
Well the cardiology appointment was today and as the title says it wasn't the news I was hoping. If it had to be anything naively I was hoping for his mitral valve or coarctation (we learned today we probably don't want the coarctation either). That's not what it was. It was the one thing that scares me to the core (before today that is). His subaortic stenosis (SAS) is back, it's growing and now his aortic valve is leaking. Thankfully it is growing at a much slower rate than it did before. It's not at a place we need to go back in and do surgery yet. But if it continues on its current path my prediction of the next surgery being between the age of 6 and 7 will be correct (he turns 6 is 1 year and 4 months). Out of all his problems I HATE this one the most. It causes NO symptoms. If it changes it's mind on how fast it wants to develop and developes quicker, Eli could drop while simply running around being a kid. Not because the cardiologist isn't watching this SAS, but because that is just the way Eli's body works. It likes to throw you for a loop. The other reason this scares me is that out of all the times we've come so close to loosing Eli the only time he was in surgery was when they were fixing this problem. I really am having a hard time putting into words the fear in my mommy heart. Thankfully Jesus knows.
So all the symptoms we were seeing are not really heart related. I now have to question whether he is getting anemic again. Unfortunately heart issues and being anemic often go hand in hand and the symptoms of anemia actually are some of the same as heart problems including: fatigue, weakness, pale skin, chest pain, dizziness, coldness in your hands and feet, trouble breathing, fast heartbeat, and headache. It seems to be a never ending cycle.
As for the blue neck? Well we got three explanations. 1) Eli's aorta is formed like a steeple instead of a candy cane. His coarctation is where the carotid arteries and other vessels go to the brain (this is why surgery or cath procedures to fix it would be very bad). Because of the way the blood flows through his aorta and into these arteries and veins it can cause these to enlarge. This would make all his vessels much more visible. 2) When they do heart surgery there are certain tubes and wires that go down the veins and arteries in his neck. After you have had several surgeries these vessels can develop what is essentially scar tissue which could cause a blockage or kink. The fluid will then go from the main vessels into new smaller ones. 3) They have no idea but they will be watching it and adding it to the many other puzzle pieces that make up Eli. I don't have a preference which one of these it is. I just would like an answer instead of adding more pieces to an already difficult puzzle.
It typically takes me a few hours at least to process how the appointment went and right now I think I'm worse than I was before the appointment. I was okay at first. But now the more I think about it I realize the more I was hoping for something I was could at least see symptoms. Not something he could die while running around like a normal little boy.