Last night, as I was putting Becca to bed (and while the nurse was flushing her IV's, etc.), she starting making weird hiccuping noises and breathing funny. Then she went limp and was unresponsive for about 5 minutes. Once she began responding, she kept breathing and acting funny for another 5-10 minutes. In the middle of the "episode," which was either a fainting spell or a seizure (and the doctors have been tending to use the word "seizure"), the charge nurse thought to take her blood sugar, and it was 40, which is pretty darn low. (60-120 is considered normal.) Not like lethal low or anything, but low. Once she had recovered, it had bounced up a bit to 44. The doctors (finally - they got there probably 20 minutes after the whole thing was over because of pager issues) ordered a bolus of sugar water (my kind of medicine!), and an hour after that was given, her sugar was up to 119 or so. They also doubled the concentration of sugar in her IV fluids for the duration of her time on them.
She was fine the rest of the night, but then this afternoon, when John noticed we had some extra blood from a draw the nurse was doing for endocrine tests, he suggested we use it to test her levels again, even though she wasn't showing symptoms, and they were back down to 50. Smart daddy. Repeat the bolus of sugar water, test again, fine.
The obvious reason for the blood sugar issues is that she hasn't had anything to eat since 7:00 on Wednesday night. However, the IV fluids they were giving her should have been enough to keep her levels healthy - even more so after they had bumped her up to the D-10 fluids (double sugar). There's definitely some kind of endocrine issue going on.
Our thought is that it's the return of an issue she's had in the past. Up until a few months ago, the doctors suspected that Becca had an adrenal insufficiency (which would not be surprising, given her septo-optic dysplasia, which can manifest in endocrine issues). hey thought that her body didn't produce enough cortisol. Any time she was experiencing "bodily stress," like when she was sick or having surgery, we treated her with "stress doses" of hydrocortisone. In her most recent tests, though, she wasn't showing signs of the insufficiency, so we discontinued the prescription (which we only used a couple of times, but definitely around her last surgery). Perhaps, though, this surgery was enough to bump her little system into disarray, which could make her blood sugar wonky.
That's the leading theory at the moment. They repeated the same cortisol stress test today that they have used all along to consider the insufficiency. We haven't heard results yet, but that would be the easiest explanation; we'd just have to go back to keeping the hydrocortisone pills on hand. But who knows - it could be something completely different. We're not comfortable going home until we know what the issue is, so hopefully the endocrinologists will have some answers for us tomorrow, so we can get the heck out of this place.
And that is the plan - for us to go home tomorrow. Becca's been getting Pedialyte through her tube since this afternoon, and in 45 minutes, they are actually going to start giving her some formula. Wohoo! If she tolerates that well, she can start eating regular food tomorrow morning. For a kid who doesn't like to eat, she sure has missed food these past couple of days! If we leave the cabinet with the fridge open (yes, the mini fridge in is a cabinet here, like some swank hotel mini bar), she makes a beeline for it. I think she's after the Kool Aid inside it. (I think we have a new favorite summer drink!) My guess is that once she is back real food, her sugars will level out, but we still need to know what happened so that we can prevent it from happening again. In the meantime, they are keeping her little feet bleeding with all the toe and heel pricks for the glucose meter! She's also had bad luck with her IV's the past couple of days, so she's been poked an awful lot - 3 new IV's in the past 48 hours, plus a few more earlier in the week. :( Nana Dana invested well in the box of Elmo band-aids she bought her for her birthday!
I also made my way down to Patient Affairs this afternoon. I spent about an hour talking with a patient advocate, and I feel confident that my suggestions regarding communication with be passed on to the team. I'll spare you any more gory details, but we had a few more issues today and yesterday, one of which made me really quite mad. I know everyone is new, but they really have some lessons to learn about communicating with parents, with each other, and among the various teams (GI, surgery, etc) taking care of my girl. The patient advocate was really helpful and I really think she will help them understand the issues within a framework of constructive criticism. Yeah, I am still kind of mad at some members of the team, but, really, my motivation behind talking to Patient Affairs was to help them learn -- that is what they are here for, after all -- and to spare other families some of the unnecessary stress we've experienced these past two weeks. And it didn't hurt that they had Becca's magazine sitting out in their office. They are kind of big fans. ;)