Over the weekend things improved very little. Alex needed 100-150mg of hydro a day to keep her out of A.I. Through all of this we have been keeping an eye on her pulse and B/P. Since the BLA we have found the balance of meds is easier to determine based on her numbers. Early Saturday afternoon we noticed her pulse was quite low, without a change to B/P. By Saturday evening I paged Dr. F. because pulse was in the 40-50 range (it's usually 80-100 for her). We kept an eye on her for several hours and never got a call back from Dr. F. I spoke with a couple other BLA ers who advised we go to the ER, but admitted they probably wouldn't if it were them. The low pulse stayed all of Sunday as well and was at 42 when I woke her on Monday for meds. I called the pediatrician and spoke with her when she called back. We decided the best bet would be the ER to get things done quickly. Dr. Leong call ahead and spoke with the ER doc.
They did get us past triage quite quickly and got labs and an EKG going. The EKG showed the bradycardia but nothing else significant. The labs showed potassium of 3.2 (range 3.5-5.1). The ER doc didn't think that the slightly low K could cause Alex pulse to plummet. He consulted with Dr Leong, Alex's local endo, and a cardiologist. Dr. Leong came through again by pushing him to give Alex potassium, since she and I had discussed it earlier. They checked in with us an hour after Alex took the K and her pulse was still low. They basically said "we were right that didn't help". Another 2 hours went by before any one even came in the room again. At that point the doc came in to send us home, assuming her pulse was still in the 40's but with no other symptoms they didn't have a reason to keep us. He was quite perplexed when I pointed to the monitor. Her pulse was bouncing around A LOT, but it was between 70-112. I'm still not so sure he believed it was the K that changed things. I have a hard time with the fact they were planning on sending us home with her pulse at 44; pulse under 40 is hitting the cardiac arrest stage.
Later that night Dr. Leong called to get the scoop. She sent over an RX for K light.The pharmacy had a hard time getting the K and we weren't able to pick it up until last night. Alex drank Gatorade by the gallon yesterday and we managed to keep her pulse over 50.
I'm still trying to process this but here's my theory: Without adrenals a body loses NA and hold K. Florinef reverses this. In theory then, too much Florinef should make a body hold NA and lose K. If a person takes high dose hydro some of it will convert to mineralcorticosteroids (Florinef). So, in Alex's situation I think the high doses of hydro over several day (which she needed for the fever/virus)while on her normal dose of Florinef resulted in the equivalent of too much Florinef causing her K to drop. I don't know if this is even possible but for the moment anyway I'm sticking with it.