The good news . . .
The tests show that Ben’s heart has had no significant changes. The growth is still there and the valve is still leaking. But it is gradually getting worse and there is still no need for intervention yet.
The lukewarm news . . .
The symptoms that he has been experiencing (weakness, headaches, shortness of breath, dizziness, nausea, and feeling “out of shape”) are baffling his doctors. The hard part is that Ben’s symptoms can be attributed to any of his three main issues (heart, high blood pressure, reflux) and we have spoken to all three specialist doctors about them. So far two of them said that they don’t think it is their issue. They all deferred to the cardiologist. Yesterday, his cardiologist said that she is not sure what is going on but that she was going to help us get to the bottom of it. According to his test results he shouldn’t be feeling any of the symptoms. But he is. In true Ben fashion, the doctor asked Ben what he was experiencing and, boy, did she get an ear full. We just sat back and let him talk. A sample of his work,
“So how long does this (Ben feeling dizzy and nauseous) last?”
“Well . . . about an hour. When I feel sick, I will either go to my mom or lay down in bed. So I’ll be laying down in my bed and then I will get distracted doing something else , like playing on the ipad, and then suddenly I’ll realize “Wow!! I am feeling better!” “
So Ben is going in two weeks for a stress test. The cardiologist said that she thinks that we need to look at several things:
1. stress test – make sure his heart is working good under pressure.
2. blood pressure – his diastolic could be too low (we always worry about his top number, but his bottom number has been high 30’s/low 40’s). We may have to change meds or lower his dose.
His blood pressure is hard to medicate. His left arm is 10-20 points lower on the systolic than his right arm. So we medicate him based on his left arm (which is lower). But according to his right arm his medication should be increased because it is way too high. So the dosage is determined by the numbers in his left arm. If the bottom number (diastolic) is going too low, then we may have to lower the dose (which could cause the pressure on his right side to be too high) or completely change his medication. It is truly a puzzling issue. Have you ever heard of anyone who has a 20 point difference in their blood pressure readings from the left to the right side? Because of the physiology of his heart, there is a huge difference.
3. medication – some of the supplements that he takes could be causing some of these issues. But she is less sure about this one.
4. reflux – his acid reflux could also cause some of these issues.
As the doctor stated yesterday, “Ben is complex.” His nephrologist has told us many times, “Ben is a conundrum.” So the good news is that we have a doctor who is trying to help us figure out the puzzle. We are taking Ben to see a new G.I. doctor (the last guy said not to call him until we were ready to do surgery and that is a whole other story) to get a second opinion. Ben is not allowed to exert himself physically until the stress test (good luck with that). Then after the stress test, we will do whatever the doctor tells us to do next.
We are grateful that Ben does not have to have open heart surgery in the next six months (I was really scared about that one.) We are grateful that we have an awesome cardiologist who cares about Ben to get to the bottom of this. We thank God that we live so close to Texas Children’s Hospital and for all of the wonderful staff and doctors who take good care of Ben.
So we are not finished with this road yet. It looks like we have a few more bends in the road before we will get to our answers. But I have confidence that we will.
The Puddles 