the short update

Hey guys...it has been an incredibly confusing time, since our last hospital admittance, when they recommended hospice. And then it's been very difficult to figure out how to briefly put this into words. Largely trying to figure out where and what made Emma fit the "terminal prognosis" requirement for hospice. What made her different than other people like her, dealing with gut issues. Like, what led to giving up on her or thinking the end was coming? While her labs weren't perfect, they didn't look alarming (especially compared to labs she's had before).

Palliative care went over it with us when we finally saw them. Emma, physically, as is, does not have a terminal prognosis, and since she wasn't choosing comfort care only, it turns out she didn't qualify for hospice. Also, the feeding clinic GI was trying to get her into was for eating disorders. We didn't realize that. It started to make a lot of things, that didn't make sense, make more sense. And it didn't feel good to piece together what was going on. What's hard to explain is that this is also how it was initially presented to me. When the hem/onc recommended hospice, I had asked him if he really believed she was to that point, and he said, "Well, she looks pretty okay to me right now, but that way if she continues to choose to not take her feeds, she'll be set up with the care she needs. Then if she does take her feeds, she can. But we can't force her."

Two things happened when he said this: 1) One being, I had just told him that morning that it wasn't a choice. I had seen, with my own eyes, how her belly expanded over the day, along with her distress, when she was on formula. I had also seen her try, multiple times, to take the feeds. So, I knew it was not a matter of anxiety causing this. Something was wrong. So, I didn't know why he was saying this. 2) The other being, when you live with a life-threatening illness, there's a looming threat there all the time. It gets stronger when things go badly with her health, and it was brought to the forefront when he said that. It was a blaring, "Is he saying that this is it??" and all the accompanying feelings came with it. There isn't quite the same safety net, that many others have, when it comes to whether the odds are for or against this really happening. So, it was severely anxiety-inducing. Meaning, my brain was swimming with a million thoughts and emotions all at once. It was like listening to multiple songs blaring at full volume, all at the same time, and trying to make sense of everything. While I can write this out in a timeline of sorts and can describe things a certain way, and it will likely seem clear to the reader what was happening, just know that, at the time, this was all one big loud blaring noise and very unclear. So, anyway, I couldn't believe *that* was the reason for hospice. So, out of respect for the hem/onc, and my firm belief I was misunderstanding something, I only talked to Tyler about it because how horrible that would make him sound if I posted it here. When that's not the actual reality, but they're treating it as though it is, that means she would then be in a position to starve to death when she wants to live...and that blows my mind. It's hard to take something *that* crazy and run with it, and that's why we thought we had to be misunderstanding something. We wanted to meet with palliative care and find out more information to make this make sense. All that did was rule out other possibilities and circle back around to this. To what he actually said.

Then, on top of that shock, there was the shock that GI was done. They weren't going to do any more tests, even though many of you had told me that you needed a lot of tests before you got your gut issues diagnosed. They weren't going to figure out why she couldn't take her feeds. That was over. So, we felt pretty stunned by the sudden change of everything. After talking to her PCP and palliative care, and getting their professional opinions on things, we realized the GI doctor, who was leading hem/onc through this, had veered into crazy land. It wasn't the first time he's done that either, but it definitely was the worst.

GI Story

Remember that hospital stay when we couldn't get Emma admitted to the ER, after five weeks of her struggling really badly. Even after she had been admitted three previous times for similar issues? Well, that's when a lot of crazy happened, too. I didn't write about it because there were already a lot of other things I needed to write about. But, now, because of this, I should introduce this doctor to you. He's the one that refused to admit her. When we pushed for it, they admitted her, and he came in the next morning. While he had been assigned to be Emma's doctor by the GI team, we had never seen him (she couldn't make it to the outpatient appointment before needing to be readmitted), other than for about 10 minutes, about six months previously when she was inpatient, and he didn't know Emma's story. Like, he came in, didn't remember her, and clearly had looked at nothing in her chart other than her name.

This is a huge summary of a very long conversation, but I told him what was going on, from her intestinal issues to her eating issues. He let me know I was wrong about all of it. He kept saying her x-ray looked normal. She wasn't constipated. She looked like everyone else. Whereas I was saying that no one looks like that after 50 laxatives (and barely eating). When I told him about her eating issues, he argued that as well. He told me that she was just making a choice and could eat if she wanted to. He looked at her and told her to start eating. The dietician spoke up and said Emma was showing a delay in her stomach. It's why she has a GJ tube. Then I mentioned that Emma had been admitted multiple other times because other doctors had been concerned and agreed with us. He went and pulled up old x-rays and started telling me those weren't of any concern either and to not believe any of those doctors. He was unbelievable. (It was also funny because he was one of the earlier doctors. I just didn't think to mention that). But those others doctors factored in the laxatives and how they weren't working. But it was like spinning my wheels talking to him. It was *ridiculous.* Tyler (who was not there in person but on speaker phone) eventually spoke up and started repeating/restating things I had just said. The doctor immediately listened. He began to understand that we were saying there seemed to be a whole system delay going on (which is what I had been explaining the whole time). So, he agreed to run tests. (Also, we just learned on Friday, through the PCP, that Emma had been diagnosed in December with esophageal dysmotility. So, that was another thing they should have known at the time.) That's eventually when Emma was diagnosed with gastroparesis. The motility specialist (different dr) explained the details of that to us, and hem/onc (who already explained they had to listen to GI when they were trying to explain the difficulty we had getting Emma admitted) apologized, saying things never should have happened this way and to bring her back next time that happens (which we did and then this all happened). Meanwhile this GI doctor, that was assigned to her, only spoke of it like it was some tiny little thing, easily fixed by medication, and never even called it by name. It took him about five seconds to talk about it and then brush it off. Soooo, circle back around, with this doctor guiding hem/onc again, and it makes a lot more sense how we ended up here with this ridiculous scenario based on nonsense. (I don't even know how he has a job, to be honest. We can't be the first family he's done really stupid things with.)

Solution

Luckily I have you guys. Seriously. You all told us about a wide variety of things to try to get more calories in Emma. Some of you mailed us things to help feed her, and then you also suggested we try changing her laxatives and formula. I wish I could hug all of you. I’m not sure I can explain how scared and desperate we felt.

And, that was it, guys. I ended up getting her x-ray report, and she had "gaseous distention" from the lactulose (I figured) and couldn't handle feeds in addition. Too painful. But we got new formula and laxatives, and she began taking in up to 1400 calories a day.

For the first week, especially, she was in heaven. Her brain seemed to be shooting out dopamine from a firehose. We could hear her laughing and squealing all throughout the house (she doesn't usually squeal, so it was super funny, she sounded like a cat). No matter where we were, we could hear her. It was so funny. But it was also really heartbreaking, knowing how desperately she's wanted food and couldn't get it. And that she had to deal with all of this on top of all of that.

Crazy to think that GI suggested hospice and a feeding clinic for a supposed eating disorder (I guess?) before they thought to change laxatives and formula. If there was any trust left in there, it was shattered upon realizing that. I understand not knowing something. I understand feeling like you've reached the end of your own knowledge. But this? No, I don't understand that.

(I have quite a bit more to update on. The rest of the palliative care visit, the PCP's therapy chat with us about this, as well as Emma's update in general. But this is long enough, so I'll send the rest of the update tomorrow evening at about this same time.)

previous post

next post