Imaging Study

Erik is scheduled for another blood pressure check with the cardiologist and a renal ultrasound at the hospital tomorrow around noon. Not only that, we are getting some blood work for the kidneys. Amazingly, I didn't have to suggest either of these things. I also did a little research and purchased a home blood pressure cuff (for the whole family to enjoy at this point).

For those of you who are curious, his systolic reading yesterday was 142, which I agree is "pretty high," as it is not even close to being listed on my chart for a boy his age and height. His diastolic reading was 70, which falls into the 95th percentile and is also a little high. His cardiologist says his pressure has increased over time.

Hypertension Part Deux

I took Erik in for a blood pressure recheck today, and it was once again too high. When I asked how high, I was told, "Not extremely high, but it's pretty high."

Uh.

Pretty high?

Please be more specific. Like, explode your eyeballs high or experiencing mild road rage high?

After I was given a very polite brush off and told I could come back in yet another month, I explained that I have watched Erik's WS peers undergo surgery, have strokes, and take antihypertensive medication. I explained my fears that we have not gotten very accurate readings in the past and that I suspect he has been hypertensive for a while. I was told "not to worry too much."

I calmly explained that I wasn't "too worried," but there is certainly a lot I don't know about what's going on in Erik's body, and my alarms have been going off. I explained the issue of renal artery stenosis and the fact I have never seen images of his kidneys. They haven't even done all of the recommended lab tests on him since his diagnosis, despite the fact I gave them a list of them. I recently gave them the list again. Although I adore Erik's pediatrician, I would give my right arm to have someone anywhere on the West Coast who could tell me what the plan should be and reassure me that Erik was in good hands. I'm sick to death of being told I'm the "expert" by physicians who admit they know next to nothing about this syndrome. I have a sneaking suspicion she knows very little about elastin arteriopathy, which 100% of people with WS have, or the high incidence of renal artery stenosis. See, my kid is 4, and his arteries are already hard. Sure, the the last couple of readings could be nothing, but color me a little concerned and in need of more information. I don't believe I am overreacting in the slightest. I was told they would start a referral to the cardiologist. I thought that was a bit over the top but decided I would at least like to speak on the phone with a specialist. Just for a little friendly advice.

I called the children's heart clinic here and identified myself to the woman who answered the phone. She brightened when she heard Erik's name, and I found myself smiling. The cardiologist is going to call me tomorrow, and I hope she can tell me what the best next step should be. I can certainly wait another month for another reading. I can schedule him immediately for a scan. I can stand on my head and sing "Sweet Home Alabama" in my brassiere and panties. I don't care what the plan is. I would just feel better being told what to do for once by someone who uses an authoritative tone, not the faint, buoyant whine of question marks and a pause for my response.

I just want someone else to take the reins for once.