Hospital Day #5

As soon as I posted my update this morning, the hem/onc walked in with an update on the second part of the swallow study.

We've never done a swallow study before, so I didn't quite understand what all they were testing for, and I got it a little bit wrong. Turns out the only thing they said was normal was her swallow itself.

Her esophagus is not normal. It is narrowing at the bottom, there are some abnormalities to it structurally, and it doesn't function completely normally. Some of this could simply be due to FA and some of it could be due to whatever is going on. They did say that none of the abnormalities appeared to be cancerous (which is a big risk for Emma).

This explains why she feels really full all the time. She gets really hungry, but she can't eat like she wants to because her stomach isn't emptying to allow her to eat more. It's been why she's been failing at getting enough nutrition in and a huge part of what is so stressful with all of this. How do we keep her fed when she can't eat very much?

So, tomorrow they'll be doing a scope to go in and biopsy several areas and take a look at what is going on in different areas. They'll be able to go down through her esophagus, through her stomach, and into about the first foot of her intestines. They think her intestines might also be struggling to move like they want (the continual constipation suggests this too), and I thiiiiiink this will help them see that, maybe? A lot of you seem very educated in this, so please feel free to explain what it is exactly that the scope can do, if you know. She'll be NPO (no food by mouth) starting at 6am tomorrow morning.

Oh, and they said that a wide variety of things can cause this problem, GvHD is one of them. So, they're hoping the biopsies will help them narrow down the cause.

When it comes to nutrition, they want her to try to eat at every meal (knowing she can't eat enough), which is something she struggles with. Then they want her to augment each meal with the liquid meal replacement drinks. They want her first goal to be 2 meal replacement drinks in a day and work her way up to 4. I'm not sure we'll be able to hit that goal today because she's still struggling to drink just 1 of those drinks.

She enjoys ordering a wide variety of food at once, but a lot of the time, she can only eat half of one of the items and then a few bites of each of the other things. She wants to eat it so badly, but since she can't, she's learned she can at least get a variety of flavors by doing it that way.

We still don't know when she'll be able to go home. We're hoping we'll get an idea after the scope tomorrow. In the meantime, we'll work on finishing the whole Psych series (on Peacock!). Anyone else watch that show? It's one of our favorites.

(Also, I'm super sleep deprived, and I cannot for the life of me tell if I actually made any sense in what I wrote here. So, I'll correct that tomorrow in case I didn't.)

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