I wish I could say it's been an easy 4 days, but the last 24 hours were anything but. In addition to the chemo, we are in hospital to see all the "ologies" for a full work up pre-BMT. One of those "ologies" was endocrinology. Our team suspected that Eric has acquired adrenal insufficiency. This is common in people who are on steroids for a prolonged period of time, which Eric was to treat his lung GVHD in the summer. Basically, his body gets so used to being given steroids that it stops producing them. Eric was taking a "maintenance" dose of hydrocortisone to replace what his body would have made, as a precaution, while we waited for a test to diagnose. Fast forward to this week and our chats with endocrinology. It was agreed that it would make sense to do the test while we were here this week and it was scheduled for Friday morning. Eric had to stop taking his hydrocortisone Thursday morning so it could clear his system and see if his body would produce any steroid on its own. He woke up a bit nauseous Thursday morning and had a dentist appointment (the only part of the work up that doesn't include "ology" in its name.) He was light sensitive and irritable (who isn't???) at the dentist, but back in the room settled in nicely to show off magic tricks by Eric the Incredible, which he's been doing for the staff all week. An hour or so later, he had an appointment with Audiology, for which he was again irritable and now also complaining of a headache. Back in his room, he settled for a bit but then his headache got worse and he became nauseous again. I'll save everyone the details, but it went from bad to worse throughout the afternoon and evening. Despite all the meds, he ended up vomiting 5x, he spiked a fever, his heart rate was high, his blood pressure low and oxygen levels low. His nurse had to take blood cultures due to the fever and they started him on blow by oxygen (they put the oxygen mask beside his face instead of on it.) The dr had said before she left for the day that she'd let the on call team know if he didn't improve that they could restart the hydrocortisone, but given the timing it was difficult to tease out if all/part of this was due to the chemo that had just started (though a reaction like this would be unusual for these particular chemo meds) or could be a random bacterial (fever) or viral (lungs) infection. As things got worse through the evening, the on call team decided to restart the hydrocortisone. Eric was given an IV bolus of hydrocortisone as well as a regular IV dose every 6 hours.
No surprise that I didn't get much sleep last night, but Eric did wake up this morning feeling somewhat better and was able to come off the oxygen. Unfortunately, that only lasted an hour or so when his temp went back up and his oxygen levels decreased again when he had a little morning nap (from the Gravol he's getting for nausea). With another dose of Tylenol, continued hydrocortisone, and all the anti emetics, Eric has steadily and significantly improved throughout the day. I asked his doctor this morning if this could all be due to adrenal insufficiency and stopping the hydrocortisone. She said it was too soon to tell; we needed to see how he progressed through the day, if the cultures developed anything and she also ordered a chest x-ray and nasal swab. The nasal swab gets us on isolation, so neither of us are allowed to use any of the communal areas on the ward (like the coffee/tea/microwave!!!) The endocrinology team checked in and also agreed that in the absence of other findings, most of the side effects were likely related to adrenal insufficiency. Its been almost 24 hours and the cultures are still negative and the chest CT looked clear. At this point, I am going to assume that Eric has adrenal insufficiency and he desperately needs that maintenance dose of hydrocortisone - and this was an awful way to find out!
Eric is currently relaxing comfortably in his bed, watching something awful on YouTube, and receiving a platelet transfusion. Before the terrible last 24 hours he was running all around the ward, shouting excitedly while hunting Pokémon, and new participants for his magic tricks. I'm hoping he'll be back to that level of enthusiasm tomorrow and my biggest problem will be entertaining him all day.
If you made it through all that medical crap, I'm impressed (and sorry) but will reward you with pics of therapy dog Olive and the x-ray giraffe below.
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