Hospitalization #6 day 8

Not a lot to update on, but I thought I'd post an update. (The real update is in the GI story, but that'll take a bit more time to write the whole thing out.)

I thought we could do a little selfie with both of us smiling, but when I told Emma to smile, she made this face. Made me laugh. (She has a slightly funnier version of this one).

Emma has been eating by mouth, handling the new feeds, and hitting her calories. Her intestines don't seem to like the new feeds a whole lot yet in the sense that we're having the opposite problem than usual, right now. But, hopefully, that'll work itself out. She's not dizzy so often and is regaining strength. She's not gaining weight right now but doesn't seem to be continuing to lose it. We're tentatively thinking we might be able to go home tomorrow or Tuesday. It depends on how it goes when they increase her feeds. They'll have their plans worked out by then for us to bring home and follow. It'll give us a better idea on what to do and when to bring her back.

The hospitalists have been amaaaaaazing. They listen. They validate. They act like they care. They're such beautiful, positive, loving people. It's so much different than what we experienced with GI. (I've never experienced what we've experienced with GI!! I really want to share the most recent thing about them but need more time to write it out.)

Also, I think I failed to say this back a while ago, but Emma actually chose hospice. Not to die but to have help until we could get her digestive issue worked out (since many explained hospice is great for that). But when we met with palliative care, they informed us that she didn't qualify, unless she chose to do nothing. They also explained that the feeding clinic that GI recommended was for an eating disorder (I got her medical records, and it listed anorexia, which is nuts. I listened to this little girl cry herself to sleep too many nights and beg for food too many days and watch her try to shove food in to many times to believe that). They said physically she had no terminal prognosis and only qualified for palliative care. So, after learning more details about everything, it ruled out all of the other possibilities for hospice and became very clear that hospice was suggested for the exact reason that was given right after he mentioned it. More of a you-need-to-choose-to-eat-or-here's-hospice type of thing. So, that's how all of that worked out.

Which leads me into this next part. When Emma was admitted this time, she did it because she desperately needed help, but she didn't want to ever come back here again. So, she did it with the agreement that she could ban the doctors that were involved in that (the previous paragraph) from ever entering her room again. She wanted me to tell you guys because she's been thrilled about it. haha. That was quite the rollercoaster to go through and based off of a completely wrong diagnosis. Also, she wants to resume transitioning her care to another hospital system. We love palliative care and love the hospitalists, but when it comes to her main issues, she no longer trusts any of those doctors.