This week has been frustrating, to say the least. Before I get started, read about why we "fired" Ginny's endocrinologist a few weeks ago.
...alright, caught up? Cool.
Over the past few weeks, Ginny has been asking for snacks and drinks more frequently - like numerous times a day. And not just asking; standing in the kitchen having an absolute melt down pointing at the snack cabinet. We'd try to be a bit healthier and give her cereal or fruit, but most times she'd turn it down and continue to cry. She would point and point and point until we gave her Goldfish, pretzels, crackers....anything salty.
Ever have one of those moments where you realize a pattern has been in place, but didn't notice it until that moment?
While on one of the CAH related groups on Facebook, I saw a picture of a child drinking pickle juice - he was craving salt. It clicked - could non salt wasting CAH kids still crave salt? I asked the group of other Moms and they responded with a resounding yes. Even though Ginny does not waste salt as a part of her condition, her aldosterone and electrolytes could still become imbalanced causing her to need extra salt. I had no idea. They asked the last time she had her renin level checked and after checking her online lab work portal, I saw it was checked back in May and the result was 31.1 ng/mL/hr. Too bad the normal range for Ginny's age maxes out at about 4.6 ng/mL/hr.
How did we never get a phone call about this?!
I called and left a message with the endo nurse asking what the hell was going on. As I've said before, I adore our endo nurse - she tries so hard to make sure we're in the loop with things. When she called back, she sounded concerned. She said that she followed up with the doctor and was trying to get him to call us back. The next day, he finally called. Through his normal bumbling, oddly uncertain tone he tried to explain that since her last electrolyte test was fine (ya know, back in January) that he planned to recheck her levels when he saw her again in August and monitor her in between.
Now, call me crazy, but how could he possibly be monitoring her from an hour away without letting us in on his "plan" of what to look for? If I'd known that salt seeking behavior accompanied by a high renin level was a bad thing, I could have called at least 3 weeks ago. I call bullshit on his "plan." It would have taken 5 minutes to call and say, "Hey, this level is a little high, but we're going to watch it for now. If you notice XYZ, call me and we'll reevaluate." But no. Wait until I call confused and pissed.
Once I explained the salt seeking behavior, all of a sudden he wanted to retest her levels and put her on Fludrocortisone (Florinef) to give her more salt. He put in the lab work and we took her in. Too bad he only ordered an electrolytes test (which was normal due to all the salt she's been eating lately to compensate) and not the renin level, which was the concerning number in the first place.
The kicker? The results were ready 2 hours after the draw on Wednesday morning (I know because I called the lab and picked them up) and he STILL hasn't called us. He either A) saw the results were normal and dropped it, even though he hastily put her on meds and said he'd follow up with results or B) forgot all together.
Honestly, I can't decide which one I believe more.
So what do we do. After filing a complaint with the hospital's patient advocate line, I'm done chasing him. Right now, Ginny is fine and we can give her all the salt she wants to keep her balanced. She has an appointment with her new endo in three weeks and I cannot wait to talk to her about all this.
I just want answers. I just want to be let in on Ginny's care plan. If you're going to order 4 tubes of blood for tests, I want a call when the results are in. Is that too much to ask? Damn right its not.