Babygirl is 19 now, but was diagnosed with high blood pressure by her local nephrologists while she was awaiting dialysis at age 11. It continued, oddly, assessed but untreated, during the duration of her dialysis. After the transplant, which she received at CHOP, her nephrologists there jumped all over it and started her on antihypertensives. The medications continued until a severe infection (never fully identified, but triggered by the severe immunosupression caused by her anti-rejection medications) dropped her blood pressure dangerously low. Emergency IV fluids, rescue steroids, antibiotics and general chaos ensued, and her blood pressure stabilized. Inexplicably, it never again returned to abnormally high levels. This is not typical in either children or adults, by the way.
However......
Babygirl was already enrolled in the HAVE program. And I learned some things that, as a physician, both fascinated and frightened me.
The scientific community knows precious little about what is normal about the vascular systems of children. How thick are normal arteries at any given age, and in any given location? How do hundreds and hundreds of normal hearts look? And what, actually, is NORMAL blood pressure for any age child?
That last surprised me. I mean, I've been checking blood pressures on kids for years, and measuring them against a chart I have copied and posted on the back of my door to show students. It's not a bad guideline, but it's not nearly as comprehensive as it should be. So HAVE clinics all across the world have been making an effort to get the answers to these questions, and they need kids like Babygirl, who are patently NOT normal, to show up and get studies done too, which is why we made a second trip this fall. HAVE clinic simply did not match up with her Botox injections.
It's a marathon day, usually.
It generally starts with blood work, but since we do that at home, we were planning on arriving a bit later than usually. We left early enough to be 45 minutes early, time enough to eat breakfast and check in. The traffic had other plans, however, and we barely made it to the first appointment exactly on time.
Echocardiogram, check.
Vascular studies (ultrasounds to measure the thickness of the walls of her carotid, renal arteries and aorta), check.
EKG, not needed this time, check.
Breakfast sandwiches wolfed down between tests, check.
Sprint from third floor of old building through 3 other buildings across the new bridge to the 9th floor of the amazing NEW building, check (glass elevators, view of the rivers - bonus!).
Visit with both the new nephrologist specializing in hypertension and our old cardiologist, check.
All of her blood work was fine. The vascular studies were a slightly nerve-wracking "probably normal for a 21 year old with a transplant" with a recommendation for a repeat in a year instead of a flat dismissal from the program. Well, crap. Not check?
Exercise stress test, not needed this time, check.
Come home wearing a 24-hour blood pressure monitor, check.
And here's the problem with this: If they are still struggling with normal (although honestly, they've locked that data down pretty well in the 7 years since we first held THAT conversation), how well are they doing with the data on the not-quite-normal kids? And when you get information about minuscule changes in arterial thickness, not only do you not quite know what it means (in either the short or the long term), you don't really know what to do about it.
"Eat healthy, exercise more, be more careful of your weight."
Alrighty, then. Because we never thought of THAT.
This is just one more nebulous way that I feel that I can't control anything. And it's an outward expression of why, even though Babygirl hasn't had an inpatient admission in over 5 years, that I haven't been able to empty this little drawer:
It's at my sister-in-law's nightstand. She gave me this drawer in 2012. It's full of emergency supplies. It has a toothbrush, deodorant, lotion and other toiletries. It has jammie pants and socks and clean panties and a spare bra (I've had to replace them twice with smaller ones for me as I've lost weight and bigger ones for Babygirl as she's grown up). There's a deck of cards and a couple of simple games and a Sudoku book and a pen. It used to have $20. I haven't needed a single thing in there, not once, in 5 years. It's a testament to my lovely sister's patience that she hasn't suggested, even once, that I could take my stuff home now. She knows where the cracks are. And she loves me enough to know they can't be fixed, but that a small security blanket can sooth the small, frightened child in me that comes to visit 4 times a year.
DeeDee
