Life on 111 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.