Happy New Year

Thank you for all of the comments and thoughts. Tyler came yesterday, and we swapped places. We've decided we're playing our own version of Lady Hawk. We get to see each other mostly in passing and very briefly.

P365/1: Emma & I at the hospital.

Here are updates on some things:

R E G L A N

So, we did end up (day before yesterday, right before things got really bad with Emma) asking them to take her off the Reglan. It was being used to help make her intestines function more, but we were scared it was causing some of these issues, since it's an awful med. They've put her back on Erythromycin.

Tyler says she is looking more like her typical sick-self most of the time now. She still has times where she looks a whole lot worse, though, like when she gets too full, and they have to pause her feeds. But, over a bit of time, it passes.

T R E M O R S / M O V E M E N T S

Her left leg had been doing this for a while (back when they did the swallow study the week before), which was well before Reglan. We couldn't figure out the cause, but it came and went in waves. Then she developed restless leg on top of that in both legs, then it progressed to her arms, too (she has a mix of feeling like she has to move, as well as it involuntarily doing it, like a tremor). Tyler says this currently seems to be happening to the left side of her body only now - left arm and leg. It still comes in waves. Hopefully, if this was due to Reglan, given more time off it, it'll go back to just being her leg (though, if that could go away, too, that'd be great).

G / GJ B U T T O N

I've appreciated everyone's thoughts on this. It's been helpful! Before I left yesterday, the hem/onc came in and chatted again. He said GI will typically refuse to place a GJ button unless there has already been a G button placed. So, he was under the impression that GI wouldn't be okay with a GJ button first. They talked, though, and GI was all for the GJ button, and he (hem/onc) thinks it's what Emma needs, too. Soooo, that is the current plan for Monday or Tuesday.

To answers some questions regarding using TPN right now, instead of the NJ tube, they say that they only use TPN when feeding tubes aren't an option.

T H E C A U S E

The doctor says he can't say for sure why all of this is happening, but it turns out he really suspects it's GvHD (new bone marrow attacking her body). It's the thing that makes the most sense to him. Regarding the biopsies they've done, he said that it's difficult to pin GvHD down sometimes with that, and, also, GI didn't biopsy down lower in her belly. It seems pretty late for GvHD to be hitting when her transplant was in 2013, buuut Emma's t-cells took forever to come back (should have taken a year, but it took 6 years). So, by the time she finally reached good levels with them, it was the end of 2019. Makes it make more sense why all of this GvHD stuff seems to be happening now.

R A N D O M I N F O

I've had a couple people ask this, and I thought I'd go ahead and explain it here, too, in case it helps anyone else understand how this all works:

Emma was born with Fanconi Anemia (FA), which is a really rare disease that causes bone marrow failure and different types of cancers. It's a complicated illness that can touch anything and everything that goes wrong with her. So, since diagnosis, she has been followed by hem/oncs care (hematologist/oncologist). They understand her illness the best. When admitted to the hospital, they automatically place her under their care.

Now that she has had a bone marrow transplant, that adds another layer of knowledge that we need from doctors. Experts that understand not only FA, but also how having someone else's blood/immune system in our body can go over time. She is now under the care of hem/oncs that are also transplant doctors (since not all of them are both). She's been followed by these doctors, seeing them every few months, since transplant. Then any time she is admitted, she is automatically put under their care. When things go wrong that require other specialties, they'll pull them in, but it's the transplant hem/oncs that make the decisions, after factoring in her specific conditions. Soooo, that's why a GI issue has hem/onc so involved.

(Also, for those of you interested in following us on Facebook, too, we have a page for Emma here.)

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