I'm still so enraged I don't know if I can write down what I'm feeling, but I'm going to give it a shot.
This past week has been a series of "AI (adrenal insufficiency) events". Starting with Tuesday: Alex woke up vomiting. We gave an injection of 100mg solu-cortef, but chose not to go to the ER (though Dr. F. tells us this is the proper course of action). Going to the ER in the past hasn't worked out well and it's something we'd like to avoid if at all possible. Over the next few days Alex was unable to eat more than a few bites but she was keeping down some fluids. We continued "stress dosing" when she felt she needed additional hydrocortisone. I just want to add here for my "non-Cushie" readers: without adrenals your body has no means of balancing fluids and minerals on it's own. Vomiting and diarrhea can be life threatening.
Moving on to Thursday night: Alex took an extra dose of hydro before bed but woke up at 2:00AM feeling awful; whole body shakes, diarrhea, extreme nausea. We opted to do another injection of solu-cortef. An hour later she wasn't feeling much improved so we decided it was time for a trip to the ER. They actually did a great job in the ER. They followed Dr F's emergency letter to a T: they gave fluids, solu-cortef, Zofran for nausea and Ativan for anxiety. It was about 5:00am by the time they gave her the meds and she fell asleep for a while after. They also called Alex's pediatrician. Another Dr. was on call but forwarded the message and the wonderful Dr. Leong was in the ER to see Alex at 8:00am.
Alex's heart rate had dropped from her normal 80-90 down to the low 50's. In the past this has been a marker for low potassium for Alex so Dr. Leong ordered a few rounds of potassium and solu-cortef if needed. Alex felt she still needed more solu-cortef so they ran another round of 100mg. Because they weren't seeing much improvement, and because of the the low heart rate they decided to admit. They put us in a nice private room upstairs and Alex was feeling pretty normal. Dr. Leong came by on her lunch break to order more labs, see how the EKG looked and check in with us. At that point she said the EKG was showing A-fib, and thought we would be better served in Sacramento where they could put her in a peds ICU for closer monitoring. She also said that we would have a staff doctor there at all times and that Alex's local peds endo would be able to care for her in conjunction with the doc on the floor.Before leaving Roseville Alex was given another 50mg of solu-cortef with Dr. Leong ordering 50mg every 4 hours or 100mg every 6 hours if needed.
So, here's where the wheels came off the bus. We arrived in Sac with the belief that Alex would be on a continued regime of weaning, or more if necessitated. Wrong! The floor doctor said we needed to wait until Alex's endo arrived. By this time Alex is completely flipped out. She is crying and truly believes she is going to die. Finally her endo arrives and tells us "she is not in crisis; she does not need any more steroids". I just thought she was freaked out before. A few more of his comments if you will? "a patient can not tell if they need steroids"~ "steroids are bad for you, you need to quit taking these"~ "have you seen a therapist? this level of anxiety is not normal"~ "you are fine; nothing is wrong with you; the labs say you are fine; quit crying". We were both nearly speechless. Where did this all come from? This endo was one of the many who failed to diagnose Alex. On the other hand we were giving him a second chance because he was willing to help us when we were testing with Dr.F. We are angry (livid?), sad, and betrayed. Did he have us come to "his hospital" so he could belittle us?
We spoke again with the intensivist on the floor. She said she was deferring all endocrine treatment to him. Now what? Knowing there would be no more steroids what are we supposed to do? We pondered it for a while and did a lot of agonizing (on my part) and crying (on Alex's part). The final decision? Ummm....cheat. Against medical advice I slipped her 40mg of hydro from the stash in my purse. I figured it would be at least enough to hold her till they could get some more fluids in. Brian had a friend follow him to the hospital so that they could leave a car there for our escape. While Brian was there I asked the nurse "So, how bad is everyone going to freak out if we say we are leaving?" She was very sweet and said she would let the doc know and that it wouldn't be a problem. The doc came in and talked to us and said she didn't have a problem with us leaving, just watch the fluids and try to get Alex eating some. She even volunteered a bolus of fluid before we left. Brian left for home at that point and we accepted the offer of fluids pushed over an hour. Of course by the time the fluids were done Alex was gonzo asleep. Around 11:00 we were on the road for home.
The 40mg I gave her at 6:00 held her for the night and this morning I gave her 20mg instead of her regular 11.25. We can only hope that whatever caused the onset of all this has abated. If not I don't know what our next step will be. By the way? We won't be seeing that endo again. Ever.