PCP, Palliative Care, and Now

This is part 2. For those who missed last night's post, you'll want to read that first because this continues on like it's the same post.

After things finally made sense, I felt sick. We felt really betrayed. We trusted them with our daughter, and this happened. Even if she died tomorrow, there's simply no excuse for blaming her for it. What a way that would be for her to go and to think that others would think she was responsible. That part breaks my heart the most. That and that she desperately wanted their help. They talk about the importance of mental health. They try to encourage child life, counseling, medication, if needed--all wonderful things. And then they do this.

About a week ago, Emma went from doing great to going downhill a bit. Laxatives weren't doing much, again, and she couldn't eat as much (though she was able to stay on her new formula 24/7). I began to feel like we were about to have another GI crash.

She was also stumbling when walking, unstable, headaches, seemed lost in a dream all the time and acted really worrisome. I wanted to take her right in. But where do we go? It's the first time I've ever felt like I didn't have a place to bring her. I got a hold of neurosurgery and explained what was going on, feeling concerned it was something with her spine or brain. They scheduled an MRI for next week.

I considered reaching out to hem/onc, but it felt like they were done with all of that. They pretty much said they need to pass this along to palliative care and hospice because they've done all they know to do, and they've scheduled her next appointment for six months from now. I considered reaching out to palliative care, but they said we'd need to reach out to the specialists if we have issues, like reaching out directly to GI. So, I considered reaching out to GI for some new laxative orders, but obviously there was no way we would allow that GI doctor near her again, and we hadn't met with the new one yet (waiting on that appointment).

It felt like there wasn't anything on the other end anymore, and I didn't know what to do. So, I kind of had a mini panic attack and cried instead because, if in doubt, that's always a good plan, right? We love that hospital. It's truly amazing. All the other employees we've met are *amazing,* truly exceptional, and as long as a person doesn't need GI, we would tell them to go there in a heartbeat. We don't want to say goodbye to that or them, but now it's kind of like eating your favorite meal while knowing there's a bite of deadly poison in it. GI went too far. There's too much hurt there now.

So, I contacted our PCP, asked for a prescription laxative that one of you guys suggested (because I'm convinced you guys are the real doctors here now), and then also made an appointment with him. He works for a completely different hospital system, an adult one, so I wanted to talk to him about switching Emma's care. He was able to get us in at the end of a day soon after.

Meanwhile, Emma's symptoms improved drastically after that day, which was a huge relief, or else we would have brought her to the ER at the adult hospital. (But that is what happens with her sometimes when she ends up crashing. It's why we think it could all be spine related.)

It turns out, the PCP told his family that he had a crisis at work, and he was going to be late. He purposefully planned to stay and talk as long as we needed. He ended up staying 40 minutes after. We were there for probably over an hour talking, and I think I could have stayed another hour, if need, and he would have been happy to. Point being, when you go from feeling like no one is really listening to you to going to a doctor that goes out of his way to provide a safe space, it means the world.

We've felt really raw and sore from all of this. And I know it's been *a lot more* for Emma to process. So, trying to take all of that stress and panic and anxiety and anger and hurt and betrayal and figure out how to put it into words that will make sense to the doctor is hard to do. Especially because speaking isn't my speciality. (I can speak, but when I compare it to everything going on in my head, it's not much.)

At an earlier telehealth visit with him, when I mentioned hospice, he was taken aback by it and said he really felt like there was more they could be doing. So, when we were sitting there talking in person, at this appointment where he stayed late, we were able to talk about all of that. I essentially used him as a counselor, who happened to be a doctor, which was the combination I needed. I needed to know that someone, who understood all of these things, could confirm that we weren't crazy for feeling upset and could offer guidance on where to go and what to do.

He said that GI doctor was gaslighting us and when he was in medical school, he discovered that many doctors are narcissists. He spent a while telling Emma, "I know you want to eat. I know that you were not choosing to not eat. I'm so sorry that this happened to you and that you were treated this way. It wasn't okay. Just hold on tight, and we'll see if we can get you the help you need." Only he went on for a few minutes just reassuring her. Emma opened up and said that she felt like they were just throwing her away, like she was trash. 🥲

I told him that we were considering switching hospitals. Maybe to the adult hospital. I asked if he thought that would be safe. Emma's tiny. She makes people that are 4'10" seem tall. She weighs about 70 lbs. She's about the height of an average 10 year old. So, everything she needs is pediatric size. How does that work? She is 19 now, so she can switch, right? (Only she isn't a typical 19 year old, which is why we are still so involved. She needs help with communication (both in speaking and understanding), as well as for some other reasons.)

In the end, we have mixed feelings about hem/onc, about leaving them. We really like them. We really love their nurses, too. You know how you bond. It's hard to leave that. But we don't really understand what role they want to be playing anymore and need to get that figured out. If it's not 100%, like before, since they're the FA experts, we need different doctors then. The grass isn't always greener on the other side, so we don't think that we would be moving to something better, necessarily. There's too much to consider still.

So, our current, tentative plan is to keep hem/onc, see the new GI, and see if that changes the dynamic in a positive way (essentially removes the poison) and go from there. If not, we'll make the needed changes. Meanwhile, the PCP is going to look into some other stuff and get back to us.

Palliative Care

I’ve told you a lot of what palliative care said already in the previous post. They also suggested we try CBD oil for her movement issues, look into alternative medicine for her gut issues, and then had an interesting explanation of what might be going on with her gut:

He said that our GI tracts are meant to experience only so much stress during a normal lifetime. Once it’s done that, it tires out, typically in old age. Children, who have experienced chemo and transplant, can experience their gut aging much faster. If you remember, Emma experienced severe mucositis, which caused a lot of massive open wounds and bleeding throughout her whole GI tract. She would vomit blood and chunks of flesh from her insides. (It was awful.) Then it took months for her body to be able to heal enough to digest food again. (The PCP talked about this, too, and said that there are things like scar tissue, too, that could interfere with it being able to function properly.)

The palliative care doctor said if it is this, it means her body won’t be able to handle the same demand on it as before, and we'll need to make sure to not overwhelm it. It'll be limited in the amount of calories it can handle, the types of foods it can handle, and things like that. If it gets overloaded, it can stop functioning very well. The trick is to stay in its happy place.

This fits a lot of what we are experiencing with her. It fits it perfectly, actually. But we still feel like it could be due to spine issues because she's, simultaneously, having what seems to be spine issues along side it. So, while we're holding this as a possibility, we're still pursuing things with neurosurgery to either rule it out or get answers from that.

Emma Update

This is where she is currently:

If she eats solids, or any meat (even pureed), her system can't handle it. Laxatives stop working very well. She loses the ability to eat much at all. We tried soft food for a while, but, due to her throat feeling weaker lately, we've started pureeing everything, and she can handle that a lot better. Learning she had esophageal dysmotility last week, when talking to the PCP, explained a lot of what the problem seems to be there. (If you're on our website, you'll see the text below from the doctor where he copied/pasted it from the report).

Once we started pureeing everything, it seemed like her intestines were happier, too. It really seems like everything is quite weak.

But, if we stick to these new guidelines that we're discovering, she does a lot better overall. She has good energy, is able to get 1200-1400 calories in a day, and life is tremendously better.

Her feeds run 24/7, and it's just one bottle of formula a day because we have to run it very slowly (we've gotten up to 17 mL per hr). We can't get more in than that, yet. Not sure we will be able to. But it gives her 500 calories, which is a tremendous help. So, she usually walks around with her little backpack all the time.

Rehab

She's been doing rehab twice a week to increase her muscle mass. There are two physical therapists that take turns with her. Sometimes we hang out with both in a day. They're reeeeally funny. They are sooo good with her. She loves going and loves interacting with them. Here they are arm wrestling. It was a tie between the ladies:

Then Emma wanted her brother to arm wrestle, too:

He's not so little anymore! <insert dramatic sob> I don't get to talk about my other kids very much, but they're amazing and so fun. He's 15 now. Also, he lost, but he made it really hard for the guy to win. Made it a struggle for him. haha. In this photo, they were admiring his muscle. haha.

While the boys were arm wrestling, the physical therapist had a sore muscle from arm wrestling Emma, so she asked Emma to make it feel better. haha. (She's hilarious.)

Here's a video of Emma doing a little physical therapy. She still has varying degree of movement issues. It wasn't too bad here. Just some arm ticks, and, at the end, her leg jumped a little. They do that all throughout her workout, too, and the physical therapists roll right with it and often make it funny. They've been really helpful for her in a lot of ways! (I should have turned my phone sideways but was trying to be discreet when I probably didn't need to.)

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