Thursday, December 5, 2013

Year Three, Week Thirty-seven - Three Month Reprieve.....

Today was Hypertension Clinic at CHOP.  This was a new experience for us, so let me share.....

We were scheduled to arrive at 6:45 AM.  Because of a bit of fog we hit the door of the cardiology department at seven on the dot.  We were met by a care coordinator who handed  Babygirl her "passport" - a list of each of her half-dozen appointments for the day with times and locations.  We hustled through some paperwork and went to the echocardiography suite. 

There are apparently more than a few things that doctors do not know about what is normal for kids.  Part of the reason for this clinic is not only to take better care of the kids, but also to establish normal values for blood flow through arteries, thickness of arterial walls, and some other interesting data that have to do with cardiac flexibility.

So this wasn't just ANY echocardiogram.  It was an ultrasound of her entire vascular system from diaphragm to ears.  I have to remind her before she leaves for school tomorrow to check and see if the ink marks on her neck are gone yet.

After those two studies, we hiked off to the lab.

Usually we are the very first people there in the morning.  We get our orders from Nephrology at 7:45 AM and arrive at the lab just before it opens at 8.  But THIS time, we were an hour later than usual.  There was a little backlog.  There was a shortage of phlebotomists.  And there was a screamer being worked on when we arrived.  The screaming (toddler, by the sound of it, and a remarkably articulate one) went on for some time.  Since Babygirl still needed an EKG before seeing the heart and kidney doctors, I told the care coordinator to take her back and get it done.  It was a good decision.  The phlebotomist had just cleared the backlog when she returned.

We arrived for our 9 AM appointment with the cardiologist at 9:20.  Since nephrology was supposed to see her at 9:30, they snagged her, grumbling mightily about the lab hold up and the 'way things USED to be done.'  I sympathize.  The nephrologist du jour was one we rarely see, but he is the one with the passion for fixing high blood pressure in kids, so we got a real vision for his goal:  Establish measurable outcomes and standards for blood pressure management in pediatrics.  As a physician I have to say that this is a much-overdue thing.  I have noticed over the years that most of my students have NO idea that although a blood pressure of 130/80 is okay if you are sixty, it's dangerous hypertension if you are, say, eight.  And frankly, no one seems to know what to do about it even if they know it's a bad thing.  (Yeah.  There's something you really didn't want to know about your kids' docs.)  As obesity and adult-onset diabetes rates rise in children, so will hypertension.

Cardiology basically seconded everything nephrology had to say, but this young and lovely lady did more to encourage Babygirl to work toward a healthier lifestyle in ten minutes than most of the other docs have managed to do in two years.

Then we enrolled in a new study about the cognitive effects of chronic renal disease in children.  It is a one day psychological and cognitive assessment that includes an MRI of the brain.  Babygirl originally flatly refused to consider this unless they would use last year's MRI, which they wouldn't.  But then, she asked me for the Windows Surface 2 for Christmas.  I priced it out, and the answer is NO. 

Suddenly the possibility of a research stipend became much more appealing.

If she participates, she gets $150, free breakfast and lunch, and a $20 gift card, which will go a long way toward saving up for that computer.  I, of course, get to drive.  Since the study will be timed to coincide with our next visit, I can't really say it's costing us more than usual.

And the next visit?  March. MARCH!!!  Her labs were all as close to perfect as we'll ever get.  That's MY Christmas present.


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