Month: September 2025

Once again, this David writing for Eva.

A week on from the last post, we have some clarity on where we are going, but none on what’s going on. I’ll start with the news, and then get to the philosophical ramblings alluded to in the title.

As you may recall, Eva is/was down to 3.5 or 5.0 ml/hr on her feed (which is about 10% of what it should be). We had two plans for improving that, and two hypotheses about what was going on.

Plan 1 was to supplement her feed with Prostat, a protein concentrate, through her tube. This was not successful. It traveled through her system very quickly. And unpleasantly.

Plan 2 was to switch to an elemental formula (one which contains the nutrients in a pre-digested form). This wasn’t a failure, but doesn’t seem to have fixed anything either.

Hypothesis one: Eva had stopped tolerating her formula. Test: Switch formula. If the hypothesis is true, symptoms should ease with new formula. As seen above, in Plan 2, symptoms did not ease. This suggests that Hypothesis one is false, which is to say, the problem isn’t Eva’s formula. This is both good and bad news. Good in that we really don’t want Eva to develop intolerances to her formula every couple of years because there just aren’t that many appropriate options for her. Bad News in that it doesn’t move us any closer to a solution.

Hypothesis two: Eva had c. diff. Test: a stool sample test. Which came back negative for c. diff. and everything else. Also, her bloodwork looks good, no inflammatory markers or elevated white blood cells. This all suggests that there is no infection present.

This leaves us where we are now: we have no idea what is going on. More on that later in this post.

We do know what we are doing: Eva is going on TPN. We are hoping to start that this evening. It will be a slow ramp-up, which allows us to do this without an inpatient hospital stay. That means that Eva will not see an immediate increase in calories, but that should build steadily over a few weeks.

Now back to the title.

A little while ago, Eva and I looked at each other and agreed that we finally had a bit of a handle on her health. Not that things couldn’t and wouldn’t go wrong, but that we would recognize what was going wrong and know what to look at. For instance, if she suddenly ceased to be able to feed at her normal rate, it was either some infection (c.diff. or SIBO, for instance), or an intolerance to her formula. Obviously, in hindsight, this is hubris, the belief by mortals that they are the equals of the gods.

We are now in a place without any idea of what is going wrong with Eva, but with clear indications that something is. At this point, we do not know whether there are any tests that we should/could be running that will point us towards answers (we are communicating with Eva’s GI to try to figure that out). There is a sense of not-knowing even what questions to ask which is unfamiliar and disturbing.

Which brings us to Humility (anavah in Hebrew). As we are in the middle of the Ten Day of Repentance, humility is a featured virtue. And in knowing that one does not know, there is a deep humility. We are required to acknowledge that our knowledge is not as vast as we imagined. To admit that there are problems whose causes we lack even the language to imagine.

We are trying to treat this mystery as just another step in learning to manage Eva’s disease. But from the inside it is frustrating and scary. And Eva is doing this on around 250 calories a day.

This is David writing for/with Eva. Life has gotten adequately interesting that we felt like an update was necessary, and hard enough that it didn’t seem like it would happen if Eva had to write it.

Quick recap: Eva has been at roughly 60% nutrition (775 calories) for about the last 6 weeks. In normal times, she runs her feed at 50 ml/hour. Six weeks ago, she ceased to be able to tolerate that speed, and had to reduce to 30 or 35 ml/hour during the day and only 25 ml/hour at night. It was just too painful to go any faster. Not to say it wasn’t painful at those speeds, but it was “tolerable”. Over this period of time she dropped 15 pounds.

Tuesday evening, Eva got really sick with pain and cramping and diarrhea. Eva’s baseline pain is around a 5. It spiked up to a 9 (note that 8 is when the pain is enough to cause her to cry). Eva reduced her feed speed to until it was tolerable: 3.5 ml/hour. For reference, at 3.5 ml/hour, it would take 285 hours to get 1 liter (Eva’s theoretical goal).

Since then, Eva has been able to tolerate 5 ml/hour when she is awake and her G tube is venting, and 3.5 ml/hour at night or when she has to close off her G tube for an hour after taking her meds (so that the meds don’t flow right out the G tube. Yesterday this resulted in a whopping total of a 74 ml of formula getting into Eva’s intestines, for the 111 calories referenced in the title.

The good news is that Eva is already on IV hydration at a liter a day, so we are panicked about the lack fluids from the decreased enteral feeding. If she did not have a PICC line and IV fluids at home, we would be in the hospital already.

Why is this happening? The short answer is, we don’t know. We have hypotheses, some of which are testable, some are, at the very least, harder to test.

One possibility is that Eva has developed an intolerance to her formula. This already happened once (Summer or 2023, I believe) and she had to switch from Kate Farms to Nestle Compleat. The symptoms looked pretty similar. On the one hand, this is good news, because it is a relatively easy fix (for certain, really odd, definitions of “easy”).

By chance, we had an appointment with the dietician yesterday. She had been out for six months on maternity leave and we had been working with a substitute. Welcome back to chaos!

She suggested a new formula. We are receiving a new and different formula from Amazon today (Neocate Splash!). It is intended for toddlers and small children, and is a different type of formula: elemental. We are unclear about what that means, but the dietician seems to think it might work. We are also adding in some protein liquid straight through the tube (collagen something or other…).

I said this was the “easy” solution, because best case scenario, Eva’s intestines encounter the new formula, stop protesting, and allow Eva to go back up to 35 ml/hour day, 25 ml/hour night, and she is able to start the process of increasing her feed rate at a maximum of 2 ml/hour every 3 days. At which rate she gets back to full nutrition in a month or two. Realistically, it will probably take longer than that to know whether he body accepts the formula, and the ramp-up will not start back at 35 ml/hour but at something slower, and there will be more pauses in the middle. Again, this is still best case.

Second hypothesis: Eva is sick. With something else on top of the gastroparesis. If she has some sort of infection (e.g., something like c. diff., but probably not c. diff. because we tested for that a month ago or so). This feels somewhat likely given that she has had similar symptoms from infections in the past (c. diff., SIBO). But given that it doesn’t feel to Eva like SIBO, and she recently tested negative for c. diff., it would be a new and different infection that would need tracking down.

What are our next steps (besides the new formula)? We are talking with our doctor about putting Eva on a dextrose solution for hydration. This would add some (though not a lot) of IV calories and give Eva a bit more functionality. Not a lot more functionality (it would add 175 calories per liter). But it would be better than nothing. The advantage to this is that it is truly easy. We just need to get the bags from the infusion pharmacy and could administer them exactly the same way we do the saline. Not a long-term solution, or even medium-term, but simple.

Longer-term, if things still look like this early next week, we begin to work on putting Eva back on TPN (IV nutrition). The dietician thinks that if we are willing to get Eva to the lab daily for blood draws, we could do this outpatient. Given Eva’s trauma response to being in a hospital after last year, this would be a major win. TPN is a pretty big deal as medical interventions go. We were pretty excited to move off TPN and onto saline in late winter. Nonetheless, it means Eva gets full nutrition almost instantly. If we can do this without inpatient hospital time, it is the quickest solution, but potentially takes the longest to get Eva back to normal (but at full nutrition while we work to get her back to normal).

Finally, we are doing all of this as Rosh Hashanah bears down on us. The good news (we thought) was that I have no service leading responsibilities. But it turns out I just didn’t know I had service leading responsibilities because the small lay-led congregation in the community hadn’t let me know what they wanted me to do until last night (4 days before Rosh Hashanah). To be fair to them, they thought they’d let me know already. We agreed I would do as much of it as I can prep, and assuming Eva isn’t in the hospital, I will do some form of Torah service/reading/sermon.

May the new year be a less exciting year.

Not much has changed since my last update. Well, all of my ginger arrived. Otherwise, it has been over a month since the norovirus infection, but my body stubbornly refuses to tolerate my feed at more than 60% of what had previously been a reasonably comfortable rate. My GI thinks it is post infection dysmotility. So we are once again trying motility agents.

I tried 0.5mg of Motegrity (we started at 2mg) and once again, my stomach immediately filled with air. That wasn’t going to work. So, at the original suggestion of my pain doc, but with the approval of my GI, I increased my naltrexone to 9mg. At that level, naltrexone not only helps with the pain, but increases motility.

The naltrexone is definitely creating motility and I continue to not be a fan of how motility makes me feel. But this is way preferable to the Motegrity and I really would like to get back to full nutrition, so I am sticking with it for as long as I can tolerate it.

The caloric deprivation continues to mess with me. My nutritionist has set a floor of 500 mls/day (750 calories) and I have been struggling to reach that every day. I haven’t been able to spin in over a week now. Reading anything longer than an article is out of the question. And long form articles are a lot for me. My concentration is just shot.

I miss doing things with my hands and I look longingly (and appreciatively) at the crafty creations my friends post online, and my fingers inch to craft. Following a pattern feels like too much right now. Even a simple one. What I really want to do is take some of my homespun and just start crocheting something. Anything. Crochet is easy that way. But I haven’t finished any of my recent handspun plies, and I don’t know if I have the spoons to go through our yarn stash to find something to play with.

That above paragraph is how I spend a lot of time these days. Daydreaming about things I want to do and then being smacked in the face with my reality that I really don’t even have the spoons to do much of anything besides daydream.

Yes, I am in a dark place and I know it. But have you seen the state of the world? I challenge anyone not to be in a dark place right now? Especially now that I have once again lost what brings me joy.

Rest assured, both of my therapists are aware of my state of mind. Erin, my therapist that I have been working with for nigh on 3 years now, has been here with me before. She knows my frustrations and my limitations. She knows that I am a survivor, and that even if when I get cranky and complainy, I will continue to push (probably a bit harder than would be ideal) to do as much as I can. And that, unlike the last time I was in this state, my spinning wheel is already out and accessible, I have a bunch of fiber on hand, and will be able to start right back up once I get my nutrition back up again.

I have tasked my pain therapist with finding more relaxation techniques for me that don’t involve deep breathing. Deep breathing is painful for me. Actually, most breathing is painful for me. My abdomen really doesn’t like moving. So all of those lovely relaxation techniques that involve deep breathing just don’t work well for me. And focusing on my breathing doesn’t calm me, because it is hard to feel calm when one is focusing on what is causing them pain. But there have to be other relaxation techniques out there. Better she do the research than me.

This coming week is a pretty busy one. I finally have an appointment with a psychiatrist this coming week. This is part of the deal with my pain doctor to allow me to get on the notriptyline to help my brain not see gut motility as pain. The goal now is for the psychiatrist to wean me off the duloxetine without me landing back in the hospital with abdominal pain. It doesn’t seem to have much, if any, effect on my mood, but my pain doctor wanted a psychiatrist to monitor the withdrawal process anyway.

Back to the nortiptyline, I have now been at 40mg for almost 2 weeks and I am definitely feeling a difference in how I perceive gut motility. Unfortunately, I am still feeling it, but it is now more of a vibration than pain. It is now simply uncomfortable. I am willing to call that progress. I see my pain doctor in two weeks (right after Rosh Hashanah), so we will see what she has to say then.

I also see my nutritionist next week. I have had a substitute nutritionist for the past few months while mine was on maternity leave. This will be my first appointment with her since her return. When she left, I was basically weaned off the TPN and getting full nutrition through my J tube. Now she comes back to me struggling to get 60% of my nutrition. Kind of a bummer note to start back up on. But apparently her daughter is adorable, so there is that.

My new CPAP finally arrived yesterday. It is all fancy schmancy and has an app to adjust its settings. The important thing is that it actually works. Although the reservoir is worryingly small. When I used to marathon sleep, I would sometimes have to refill the reservoir on my old CPAP before I was ready to get up. I still sleep a lot, but not that much, so hopefully it won’t be a problem. Fingers crossed.