Soooooo... here we are back at square one. I took Will to the pediatrician for blood work (to check his potassium) and a blood pressure check. We did the blood pressure first, thinking that it would cause Will less distress than getting the blood draw.
He started screaming when the blood pressure cuff went on his arm. Then he cried harder when it started to inflate. His blood pressure came back "higher than they'd like." Duh. Was it the screaming that gave it away?
So I calmed him down (Will's new favorite thing is 'Head Shoulders Knees and Toes'). We tried the blood pressure cuff again on his arm. More screaming. Another high reading. Blood pressure cuff on his thigh. Screaming. He was so upset his poor little body was arching, fighting against the cuff. He had a wild look of disbelief in his eyes - "Mommy, why are you letting them do this to me?" Ugh. This doesn't get any easier.
They put the blood pressure machine away and tried to take his blood pressure the old fashioned way - with a stethoscope and hand-held cuff. But it was too hard for the nurse to hear his blood pressure over the crying. All of the blood pressure readings they got were high (obviously) so we don't actually know if the new medication is working.
After all the fun with blood pressure cuffs, we still had a blood draw to complete. But thankfully, they were able to get enough blood so that at least the whole entire trip wasn't a bust.
Just got the potassium level back, and it is still high. The old medication supposedly caused elevated potassium, and the new medication was supposed to eliminate that. But there was actually no change in his potassium level since we've switched medications. So now the nephrologist wants us to switch to a low-potassium formula. But the new formula has fewer calories than Pediasure. And we've been having such luck with the Pediasure and Will's weight gain.
I've asked the nephrologist and Will's cerebral palsy specialist (who told us first to start with the Pediasure to help aid weight gain) to talk. I certainly can't be the one who decides if the potassium level or the weight gain is more important. So now, we wait. I've also asked for a prescription for a pediatric blood pressure machine so that we can check Will's blood pressure at home where he's more comfortable. Hopefully we can start to move past this blood pressure-medication-potassium-screaming-Pediasure-blood work hula hoop drama!