The Puddles

that Ben has nothing wrong with his aorta (besides the problem of  the narrowing in the sinotubular junction) or the aortic valve (which was labeled by the radiologist as mild-moderate leaking) or his kidneys or the arteries leading into the kidneys.  So there is nothing currently that the cardiologist can fix surgically.  She is at a loss as to what is causing Ben’s high blood pressure.  She has checked out all of the things that she knows to look for and so she is sending Ben to a new specialist.  A nephrologist.  I am just impressed by the title.  I hope that he/she can find the answers that we are so desperately looking forward too.   Our cardiologist is officially sending Ben to Texas Children’s Hospital Hypertensive Clinic that is run by nephrologist (she said that they are renal doctors).

So we know what is is not. Or as my mom said today, “At least we can check that one off the list.”  So true.  The positive outlook was helpful.  Our doctor told us that she didn’t need to see Ben for another six months.  That’s good.  The detailed MRI told her everything that she needed to know currently, and she could wait awhile to see him again.  Now that is positive thinking.  We are still watching and waiting on Ben’s aortic valve. High blood pressure can, over time, damage the kidneys (it’s like taking a power washer spray and shooting it into your kidneys) and cause the heart wall to thicken (from the heart working so much).  She sees no evidence of either.  That is also good.  She increased Ben’s meds again, so hopefully his blood pressure will come down some more. She said to call her if we had any questions and that we needed to contact our pediatrician for a referral for the Hypertensive Clinic (which is her way of signing off).

So I called the Hypertensive Clinic and they didn’t have an appointment for Ben until mid-December (Geez.  That is not good that there are that many children who have high blood pressure.).  The very nice lady in appointments said that if I wanted an appointment sooner that I would need to have my pediatrician or cardiologist call and request an earlier appointment.  The cardiologist made it clear who to call next, so I called Ben’s pediatrician and asked for her help.  She called the TCH clinic today and told them that I had concerns waiting until December (now that is a mark of a good pediatrician.  Our family doctor in Nebraska did the same when Ben was initially diagnosed.  It really gets the ball moving with these big hospitals). So I actually got a call back from the Renal clinic.  Of course, I was not home. This nice woman told me that would call my cardiologist in the morning and get info on Ben and see if she could move Ben’s appointment sooner.  My fingers are crossed.

I know that this is good. I know that right now Ben doesn’t have to have surgery.  But I am so tired of one more problem and one more specialist. Ben has been to a cardiologist, radiologist, neurologist, geneticist, dermatologist, and now a nephrologist. And he is six.

My prayers weren’t answered today.  I just wanted an answer.  Chris’ prayers were answered .  He just didn’t want Ben to have surgery.  Ying and yang.