At least when it comes to her respiratory issues, we're getting better. We thought she was going to have to go back to PICU last night, but she didn't. So she's still in PIC, which is a good thing. And she's finally off the BiPap when she's awake. But she's still on 8 liters of oxygen. They're working on bringing that down, but slowly.
Today we've seen Dr. B., a geneticist, Dr. G., her endocrinologist, a dietitian, her pulminologist Dr. A., and the regular peds doc on the floor. They're also going to see if the neurologist that she's scheduled to see on Thursday will just come over and see her in the room instead. Plus the constant parade of nurses, respiratory, and other people.
Anyway, so Dr. B. said that as of right now, nothing is jumping right out at her. But she's going to think about things more. They did do a blood draw for a variety of things, but nothing so far. And she explained that genetics is so vast and unknown. There's so many things they don't know yet. They really have so many things to look at, but they will. She did tell us that we shouldn't expect to have any answers when we leave here. But at least she's looking at her.
Then Dr. G. came and it took all I had to not go off on this woman! After doing minimal testing and telling us that it was environmental a month ago, she comes in here and tells me that this is definitely NOT due to overeating! Well no kidding!! We've pretty much thought that all along. But she's the one who had mostly dismissed us, telling us to come back in 6 months. And while I'm so not happy with her, she's the doc we've got here right now. So I'm stepping carefully. She said that she was going to consider more options. No idea what, but she's thinking more.
The dietitian also came, but there wasn't anything else she could offer. I explained that we've seen them before. She asked me a bunch of the same type of questions, and like everyone else, said it doesn't sound like this is anything related to food/calories. The only thing she did say was to NOT decrease her calories anymore. If she's getting 1100-1300 calories/day, that's fine, but no less. She still needs calories for just daily activites. She said to just try to continue increasing her activites.
So, she fell asleep about 20 minutes ago here, and she's not on her BiPap. She was working on something and just doozed off. But she's still on the oxygen, and at least her numbers are doing OK. I'm gonna have to wake her up in a bit though to get her ready for bed, and she'll need her Orapred tonight. But the nurse is calling the resident to come and listen to her. She sounds like crap honestly, but the fact that her numbers are staying OK, I'm not as concerned.
Not too much else to say at this point... Daddy's coming in for the night shift in awhile. We have no idea how long we're going to be here once again. I don't expect before Wednesday. And really, who ever knows?!?
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