GI Saga

Okay, so now to the cage fight I mentioned. I decided to tell the GI Saga itself, because (a) it's therapeutic, and (b) FB is really random in who it sends updates to & many won't have seen the first posts on this. So, I'm including the whole thing to make the cage fight make sense, which means it's really loooooong! While I think it's worth reading all of it, I labeled sections to help assist those that might want to skip through to the parts that they want.

EMMA'S AGE

So, something to know is that while Emma is 19, she looks like a 10-12 year old. When I say she's little, I mean that 4 ft 10 in tall people tower over her, as they are nearly half a foot taller than she is.

In addition to that, and while this is a big story all on its own that I might share one day, Emma deals with some cognitive challenges, made significantly worse by transplant. Then she is also hearing and speech impaired. So, when it comes to the hospital, this means we take things the doctors say and reword it all into something she understands (if needed), as well as do most of the communicating with the doctors for her, as she's unable to do this herself. Our goal is to be *her* voice, so we always speak what *her* wishes are. If we don't know, we ask her. If she needs time to decide, which is usually the case, we let them know that she hasn't decided yet, and we give her the time she needs.

So, she's always involved, and she makes all the decisions. (She's actually been involved in the decision making since the age of 10 and is very good at it. There's a deep wisdom to her, as well. And when it comes to emotional intelligence, she excels.) Then we provide the follow through in all things where she's unable. Like, finding doctors, making appointments, giving her medication, understanding what's going on with doctors/hospitals and explaining it to her, and things like that.

I wanted to explain this because being 19 years old doesn't play out the same for Emma as it does for the majority of 19 year olds. (That being said, there are parts to her that are a more typical 19, too. It's an interesting mix.)

TIMELINE

So, this section is more of a GI Timeline. I'm focusing on two GI doctors, specifically, that I'll refer to as GI #1 and GI #2, because we see them as the problem. They mostly come into the picture starting with hospital stay #4 and on through stay #6.

Hospital Stays #1-3

For the first three hospital stays (that, altogether, equalled about a month of her being inpatient) we rotated through a bunch of GI doctors, and it wasn't these two. Well, we did see GI #1 for one day. He said that she didn't know how to poop and that she was constipated so badly that she needed 8 miralax in 3 hours to try to clean her out (except she could only do maybe 4-5 miralax). But for the remaining 30 days, it was a rotation of other GI doctors, who looked at her results, concluded her stomach was having issues, and ended up giving her a GJ tube to bypass her stomach and things like that. They were good doctors.

They had assigned Emma a GI doctor (GI #1), but we never could get in to see him, outpatient, before she needed to be readmitted. So, other than that one time when he saw her, before any testing had been done and before she had the GJ tube, he didn't know anything about her and didn't remember her.

Refusal to Admit Between Hospital Stay #3 and 4

There were seven weeks between hospital stay 3 and 4. Within a couple weeks of being home, she was struggling again and needed help (to be clear, she's always struggling, there is not a day she feels normal, but it's like once she fills up everything inside, she starts to need help). That lasted for a little bit, then she was okay for a couple weeks, and then she went downhill hard after that. (It was a total of three weeks of struggling, over a five week time period.)

I emailed them multiple times a week, took her in regularly to have them check her out, and they continued to refuse to admit her. It felt awful to climb into bed at night, knowing she was lying in her bed hungry, and I couldn't seem to get her help or figure out how to feed her very much at all. The guilt of that led to many nights of crying myself to sleep. I couldn't understand how we went from good care to care with no logic anymore.

Spoiler: As far as we can tell, based off of what we've witnessed, and based off of what hem/onc has said (that they had to default to GI), it would be because GI #1 had taken over her care & was listed as her doctor, even though we had never seen him outpatient, he didn't know us, didn't talk to us, didn't anything, and once we did meet him (further on in this story), it became very clear that he didn't even spend time reading her chart to make any sort of educated decision.

ER for Hospital Stay #4

That last week, things got worse. She was eating less and struggling more to pass stool. Hem/onc helped guide in increasing laxatives. She ended up with 50 in a week's time and very little food in (and the ER xray, after that, showed she was still very full of stool). She ended up not eating at all one day. So, by that evening, I emailed hem/onc, and I told them she wasn't eating, and I was taking her to the ER to be admitted. Considering the lack of proper response during all of this, I was bracing for resistance.

That's when we got there, the ER doctor called GI#1 and hem/onc to see if they should admit her, and they both refused to admit her and tried to send her back home. Later hem/onc explained that they defaulted to GI. So, that's when Tyler and I dug our heels in and pushed the issue. The ER doctor is the hero in this story. She said she would go through all the doctors, if she had to, to get Emma admitted. But hem/onc ended up taking her, and GI #1 grudgingly said he'd see her in the morning.

Hospital Stay 4:

GI #1

I wrote a blog entry on this here, but here's a summary of it:

When we saw GI #1 the next day, it didn't matter what I said, he wasn't going to listen to me or change his mind from the previous night. He walked into the room with everything already decided. It was obvious he hadn't done any reading beforehand, either. He didn't know anything about her. According to him, nothing was wrong with Emma, she wasn't constipated, she *never* had been (remember the 8 miralax he tried to give her?), and she was just "choosing" not to eat. After flipping through her medical records quickly, like flipping through pages in a book, he told us that we shouldn't listen to any of the previous doctors, from the previous hospitalizations, because they don't know what they're talking about. Even though he was one of them.

It felt like I was in an alternate reality having to stand there and listen to him say such stupid things. I openly disagreed with him, got firmer in my insistence that something was wrong. Used this thing called a "brain" and "logic." Meanwhile, he clearly lived in a magical land, where nothing is ever wrong if he says so. Only, he didn't speak like a princess. He spoke more like an interrogator or like this was a court case. Only there was no way to prove anything to him. Not if it came from my mouth.

After several minutes of this (10-15?), Tyler spoke up, on speaker phone, restated what I'd said in a male voice, and suddenly the doctor could hear and became concerned that, by golly gee, something might actually be wrong with Emma.

GI #2

So, the next day I met GI #2 for the first time. His job is to do the motility tests. The results of those test will not only tell us, potentially, if Emma has motility issues, but this could also give clear proof as to the poor decisions GI #1 was making. (Though, it should have already been clear he was making poor decisions.) It was also obvious that the two men had spoken to each other, specifically regarding the discussion I had had with GI #1 from the day before, because GI #2, who I never discussed these things with, would continue "correcting" me about things. He, too, told me not to listen to any of the other doctors. The ones that thought Emma was having issues.

GI #2: Motility Study Mistake?

They did the motility studies, and, if you recall, during the tests, an IV medication, that is used to help the gut work better, was supposed to run through the IV over an hour. But there was an error, and it did it in 30 minutes. The lady doing it looked panicked and called the doctor. He said it was fine. I hope that's the case because it seems like it would have potentially made the dose seem stronger, at least initially, and work faster, as well as potentially messed up the timing of the test. I don't know enough about that med to know, but it is something that leaves us wondering.

GI #2 Motility Study Results

He came in with the results the next day. He said that Emma's intestines and esophagus looked like fine. (She had previously been diagnosed with esophageal dysmotility, so I think it's more that the test missed it that time, since she continues to have struggles.) But he said her stomach had gastric dysmotility. I had never heard of it before, so I had him repeat it so I could write it down. Then I asked him what it meant, and he explained it.

As he continued speaking, he then began to refer to it as "her gastroparesis." I stopped him and asked if she had that, since he hadn't said, "she has gastroparesis," and he said that he didn't know if she did, another test would show that. He said that gastroparesis is a severe form of gastric dysmotility.

But, later on, on a different day, it was confirmed it was gastroparesis. My memory of this is not nearly as clear as my memory above, and took me more time to remember, but it was Dr B (a hem/onc) that was talking to us that called it that, too, so I asked, "So, does she for sure have gastroparesis?" And he said yes.

APOLOGY

So, hem/onc came in (the attending, not her regular hem/onc), after the diagnosis of gastric dysmotility, and apologized to us. He told us that Emma never should have gone that long without help between hospital stays, and it shouldn't have been as difficult as it was to get her admitted. He said to bring her back in, if she stops eating. Just a day or two, bring her back. He was super sweet and super kind.

HOSPITAL STAY #5: HOSPICE / EATING DISORDER

We took her back in, they didn't help her much at all. They got after her and told her sternly that she needed to eat. She continued saying she couldn't. So, they offered a feeding clinic (which we later found out, from palliative care, was for eating disorders, and I later saw "anorexia" written in the medical records), as well as hospice, and said, "This way she can choose to eat or not." It felt shocking and sickening.

If GI #1 had said these things to me, instead of hem/onc, I would have waved it off, easily, due to the fool that he is. But the fact that hem/onc said it, someone we really respected, combined with the deep importance that it is to us to respect Emma's life and make sure we do our part to try to give her as gentle of an ending to this life as we can, should we ever be faced with having to make that decision...we felt stunned and confused. What *is* actually happening??

Our family went on *quite* the journey through all of that. And long story short, it turns out it was all because GI is a moron. If they had spent any time talking to her, they would know it's not an eating disorder and that they left her with no plans of care and no help.

As we were trying to choose what to do with hospice, we were also trying to figure out how to feed Emma ourselves. We felt like we were on an island, all on our own. Everything felt really terrifying and we felt very betrayed. It's not at all like how we imagined hospice would go. We followed the gastroparesis diet very strictly, began pureeing everything, you guys helped, too, and we managed to start getting more in her.

MEDICAL RECORDS

As I mentioned, we ended up getting her medical records. This was for the new GI doctor, as well as our own sake. We wanted to know what was written in them. As I was looking for test results, I noticed I couldn't find the gastric dysmotility or gastroparesis diagnoses anywhere. I began to wonder if I didn't have all the records, or if maybe a mistake had happened in the written report. So, when she was admitted for hospital stay #6, I began to ask questions.

HOSPITAL STAY #6

This hospital stay was different than the other ones. It was the first time to be admitted under a whole new set of people. Instead of hem/onc, it was hospitalists. Instead of hem/onc in charge, it was largely palliative care. (Though, it was a team approach.)

Palliative care was concerned, too, that Emma had no plan of care. It didn't make any sense to them. They also didn't believe this was an eating disorder. They felt like her medical history made it clear she very likely had something else going on. I felt relief that they saw it too.

Meanwhile, I asked all of these doctors if they could see the gastric dysmotility or gastroparesis diagnoses listed anywhere. They couldn't, but they said Emma's record is very long, so they would have GI come in and talk with me.

OTHERS' OPINIONS on GI #1 and GI #2

There were three different employees that came in to talk to me about GI. They had a lot of bad things to say about them. I'm so grateful they spoke up. It was so validating. They said things like:

• Multiple families have told us that GI walks into the room with a diagnosis in mind, and it doesn't matter what you try to explain to them, they won't change their mind.

• They don't take the time to actually listen to any symptoms.

• They really only listen to other doctors, not the families. I said that they seem to listen to men but not women, and she said, "I DON'T KNOW WHY THEY DO THAT!"

• If a family goes somewhere else for a second opinion (probably because the GI doctors gave a really stupid diagnosis), the GI doctors send a termination letter to them.

• One of them asked me if it was just their GI department that is bad or if all GI departments are bad because none of the families like their GI doctors. (We don't have much experience in GI-related issue. But it's a very common complaint that I see on support groups where people really have awful experiences with GI. But, these two GI doctors, compared to the several we had before for this for this issue, are especially awful.)

GI #1 and GI #2

If I haven't mentioned this, these two GI doctors are from the same country. While that generally is something I find interesting and am curious about, it hasn't played out that great with these two (beyond their amazing accents). They're full of gaslighting and disrespect in a way I've never experienced from doctors. I ended up looking up their country, only to find out that women don't have equal rights, and narcissism seems to be built into the culture. It made what I was seeing with these two doctors make sense. It also made me realize there's not much I can do to get around all of that because I don't think they're capable of looking at me and considering what I say to mean much.

But I've had a few months to sit and think on all of this. I've been able to replay things in my head. I decided that if the GI doctors come in again and try to paint reality in any other way other than what it is, I won't allow it. I'm done. My mistake with the hospice thing was I didn't understand what was happening. So, I couldn't say anything. But now I do. So, while I can't stop them from being irrational, I will *not* allow anymore craziness without me fervently opposing it and speaking the truth. No one stopped them before, and it allowed them to take things ridiculously far. It's not happening again.

THE CAGE FIGHT

(If you are someone that skipped down the post to get the cage fighting story, scroll up three sections to Hospital Stay #6 and start there.)

So, they mentioned GI would come in and talk with me about what all of her GI diagnoses were, and so GI #2 walked in later that day. I called Tyler, and put him on speaker phone.

There's an air about this doctor that people seem to pick up on, myself included, that goes beyond the fact he's really big and tall. He has an intimidating presence and interaction style. The bad part is he seems aware of the power he holds, and in this instance, it felt like he walked into the room, ready to use it. He stood at the end of Emma's bed and in aggressive tone said to me, "I have *never* said that Emma had gastroparesis."

Confused as to why he was claiming this, since he had said it so many times, I said,"Yes, you have."

He said, "I *absolutely* have not."

I said, "You've called it gastroparesis multiple times."

He said, "I have never said that. I have only said her results were normal." Which is far from the truth.

I paused for a split second and thought it's possible he simply doesn't remember. He probably sees a lot of patients. Or (because, and while I have since remembered, I was realizing I couldn't remember who confirmed it was gastroparesis) maybe I needed to mention the gastric dysmotility, instead, since it's the diagnosis I *very* clearly remember him giving to me, to see if that refreshes his memory and resolves the issue.

So, I did, and he said he didn't forget anything and that he never said anything other than her results were normal. (Which is not true!)

The other possibility is that I'm remembering wrong, but I'm not. In order to believe that, it means the memories I very clearly hold in my head, where he came in and said that her intestines and esophagus look fine, but her stomach has gastric dysmotility, would have to be false. It means when I asked him to repeat it so I could write it down, that that memory would have to be false, too. Then when I asked him what it meant, it means that memory would have to be false, as well.

There's just no way. It was a full discussion and was something I'd never heard of before and learned from him. Then he referred to it as gastroparesis afterwards. Whether he meant it as a diagnosis or not, he absolutely called it that multiple times. And I would have been fine with him clarifying it was gastric dysmotility and not gastroparesis. But I didn't understand why he was claiming none of it happened at all. Like, I couldn't wrap my mind around that!

Also, his whole approach was that of a bully trying to dominate and control, which I felt *really* done with from these two. Why not walk in and be nice? Here are some other examples on how they could have approached this:

EXAMPLE #1:

"Oh, I'm told that you think she has gastroparesis. I recognize I called it that, like 25 times, but she doesn't have it. I just like to randomly call people's health struggles by known conditions, just for fun. But I totally didn't mean for you to think she actually had it."

EXAMPLE #2

"I'm told you think she has gastric dysmotility because I told you, 'she has gastric dysmotility,' But I really didn't think you would take it as a diagnosis. Remember how I said not to listen to the doctors? I meant me, too."

EXAMPLE #3

"She has gastric dysmotility, but it would have made GI #1 look really stupid for not admitting her to the hospital when she needed it. I didn't realize that until after I gave you the results. So, my solution was to cover it up by writing "normal" on the result, and then by coming in here and denying I ever said it. I figured if I was aggressive enough and made you agree that it never happened, then we'll be good."

EXAMPLE #4

"Initially, I thought she had gastric dysmotility, but later on, after looking through more results, I realized she doesn't, and I forgot to update you."

But he didn't do that. And with their past of gaslighting me over ridiculous things, as well as their track record in claiming crazy things being pretty high, not only to myself but to other families, I did what I said I would do. I wasn't going to allow it to continue. I was done with this. He absolutely said it. I knew he had. End of story. If he has some explanations to add to that, fine, but refusing that it even happened??? No way.

Throughout all of this, he would quietly laugh at things I said, kind of like you do when a child is being silly and dramatic. Both of them have done that to me. Only I'm telling them things that aren't funny and involve Emma's suffering. But they dismiss it like I'm just being a silly woman. They did this from the moment they met me. Whereas Tyler they believe, even when he repeats what I say. It's incredibly frustrating. Especially knowing that Emma is suffering on the other end of this.

So, we had a little clash. Every time he tried to declare he never said anything that I know he said, I corrected him. He would deny it. I'd correct him again. Remember that intimidating presence that I mentioned he had? That was gone immediately. I had months of an emotional rollercoaster, not just my own, but that of my family, too, as well as continuing to watch Emma struggle, that fueled my interactions here. I wasn't seeing red or out-of-control mad. It felt like the opposite. It was almost therapeutic to have him confront me and allow the interaction.

It was clear he did not expect me to speak to him in the way I did. I wasn't yelling. I wasn't doing anything other than firmly disagreeing with him, restating what actually happened, as well as asking him why he's denying it because he knows he said it.

Tyler piped up and tried to get the doctor to explain what he thought Emma's problem was if it wasn't dysmotility. His plan was to go step-by-step with the doctor through Emma's symptoms to see how he could possibly come to the conclusions they've come to. The doctor answered and said he thought it was an eating disorder. And, I was like, ahhh, you said the wrong words...

Tyler said, "Respectfully, I completely disagree with you. Emma *wants* to eat. She *begs* to eat. There is *nothing* about her that shows that this is an eating disorder." While I said something along the lines of, "You act like your testing can catch everything. *It can't.* There are so many people that suffer with GI issues and can't find any answers. The science is not there yet. *You should know that.* If you don't know something, you can say *you don't know it.* You don't blame her for her problems. You're not even a therapist and you can't diagnose an eating disorder. *She absolutely does not have one.* Stop saying she does."

I brought up things from the first three hospital stays (which he was not a part of) to try to make the point that there was evidence this was a dysmotility issue and not an eating disorder. We have an esophageal dysmotility diagnosis from then. (It's not like back then is a separate situation from now. Once this problem started, it has never ended.) There was a reason she had a GJ tube. But he denied everything I said. With no thought, too. He even denied things I saw with my own eyeballs that he didn't. The speed and degree at which he denied things showed he clearly wasn't in there to have a discussion. He wanted to discredit everything I said and wanted to dictate what had happened in the past (or what he wanted to have had happened) and dismissed everything I said.

As I continued to stand my ground, his behavior got more and more intense. Like, his arms were flailing as he talked. He was getting a lot more animated and losing more control. I ignored that he was doing that and continued on like I had been.

But he was getting very emotional and continued to lose it. He stopped looking me in the eyes. Then soon after, he rarely looked at me at all and would direct his answers to the nurse, even though the nurse hadn't spoken to him at all and never did. She was attempting to walk over to Emma to remove her from the room and away from him. She had a look of complete shock on her face as to how he was behaving. (He really intimidates people, and he was getting really intense.)

At some point, after he tried really hard to completely discredit anything I said, he totally lost it, and hightailed out of there. As he stepped out of the room, I said, "I know you're lying," as he walked away. And I really do genuinely feel that way. He adamantly insisted he remembered. So, if he did, that means he's lying. He also denied so many other things that had happened. It's like they're used to being able to say whatever they want.

I think we like to elevate doctors to an above-human status. Like there is something about them that makes them not behave in ways that the rest of us do. And I think a lot of doctors do their best to do that, which we're all grateful for, but they are real people and there are going to be ones with personality disorders...like these two.

Was it important to stand my ground here? It sure felt like it. You don't give a diagnosis, then come in and pretend like it didn't even happen, especially after you've done what you have to our family and all the gaslighting before this. I like to hope that, in the future, this will save another family from being treated the same way. I doubt it, but I like to hope. (And hopefully other families are doing the same.)

PALLIATIVE CARE

(If you skipped to get the cage fighting story, scroll up four sections and start at Hospital Stay #6.)

So, that nurse he was talking to (that was going to take Emma out of the room) was from palliative care. He had walked in while she had been in there talking to us, So, she watched the whole thing, and I have never been so grateful to having a witness than I was right then. I didn't have to retell it to her. I didn't need to sit in that space where I felt like maybe they wouldn't believe me. She saw it all.

When the doctor left, she sat down in a chair in front of me with a look of shock on her face. She said, "You need to call patient advocacy because that was not okay at all." Tyler wasn't so sure that we needed to, but he also missed a ton of what had happened because he couldn't visually see what was going on. She insisted and asked us to please talk to them.

Really quickly, I noticed Emma was trembling. Her whole body was shaking. She held her hands out to show me and was like, "I don't know why I can't stop shaking." I sat down on the bed next to her, and I wrapped her up in a big hug. I held her for a few minutes until it stopped.

I felt really bad that it had all happened right in front of her. None of us had any idea that he was going to escalate it like that and that he was going to behave like he did. But, at the same time, I already knew what happened when we didn't say anything, like happened with the whole eating disorder/hospice thing, so I didn't regret standing my ground. And Emma said she was soooo glad that I did. It was therapeutic to her, too.

(Later on she said that she couldn't believe he was saying those things because she heard him say she had gastroparesis, too. She heard him say it multiple times. She really liked the part where he ran out of the room, and she thought it was really funny because I'm so little compared to him. So, we laughed about that part together.)

Anyway, going back to the chat with palliative care, as I held Emma, I told the palliative care nurse, "It almost seems like I should apologize for that, but I'm not sorry for my part. It felt like the right thing to do. They need someone to push back on them because it's not right how they treat people." I started crying, and said, "They've put Emma through sooo much, on top of everything she's already dealing with it, and it feels so wrong that they've gotten away with that! It's not right what they've done."

She asked again for us to talk to patient advocacy. She was really upset. So, Tyler and I did later that day. A man came in and asked for details on what happened and we explained it. I'm assuming they'll talk to palliative care as well.

As the day went on, I only felt support from everyone. I really got the impression that these doctors are ones they can't stand, and any time someone speaks up, they're very happy about it. It seemed like I did what a lot of them have wanted to do. One of them was like, "Oh, no, it's totally fine you spoke up. You didn't call him any names or threaten him. It's totally fine."

I keep thinking about it all, though. Trying to make sense of it. I don't understand what the point was in denying the conversation happened in the first place. That part of it is very confusing and concerning to me. Like, it feels like there's more to it, but maybe not. Maybe it's just a simple misunderstanding that he handled incredibly poorly because he has a huge ego and can't admit a mistake? I don't know. But I do know that he doesn't get to even look in Emma's direction ever again, and while that hospital is truly one of the best we've ever been to, the fact that she has GI issues, and those are the GI doctors, means we will not be going back there again. Unless we have to for some other reason, but it certainly won't be for GI.

So, we're glad to be back home and now to be headed in a new direction. I'm a little bit scared that we'll have new doctors that will be difficult too, because I heard a lot of stories about bad GI doctors. All I want is for them to take Emma's situation seriously. At least come up with a plan of care for her, so when she has her struggles, she has a safe place at the hospital with empathy and kindness. That's really all we need from them. No more gaslighting her. No more hurting her that way. None of this had to go this way, and they took an already overwhelming situation and basically abused her with it. Just help her when she needs it and choose kindness. So, fingers crossed the next set of doctors can do that.

Anyway, so that was the stupid cage fighting story.

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