Month: October 2025

This is David writing. Eva is too distracted by pain to feel like writing.

I suppose that first paragraph could be the entire blog post. But I’ll add details.

We still don’t know what’s wrong. We know it isn’t c. diff. Multiple stool tests have confirmed that. And there is no evidence of a UTI. But Eva’s white blood cell count has been gradually rising, suggesting an infection somewhere in the system. Unless it’s just being caused by stress.

There is, as mentioned above, a lot of pain. Some days are better than others. Some days are worse. They aren’t ever good.

As I mentioned last time, the GI wants to do a special MRI called enterography. This would give a close look at Eva’s intestines. Unfortunately, to do this, Eva would need to get 1500 ml of contrast into her digestive tract. Now, we have a fairly clear idea of how much we can put into Eva’s intestines, depending on whether the contrast acts more like her formula or more like water.

If it acts like formula, Eva can pump it in at 3.5 ml/hour. In which case it would take 428 hours to get it in. Obviously a non-starter. If it acts more like water (or exactly like water) we might get it in at the rate at which she can push water flushes, roughly 60 ml/15 minutes. Which would take more than 6 hours. And assumes that Eva can maintain that rate for more than 2 syringes of 60 ml each, which is untested. And it assumes it doesn’t start pushing stuff out the other end, which seems like a really bad assumption.

All in all, it seems unlikely that this is going to work at all.

After pointing all this out to various doctors, we are now working on a variety of other options.

An abdominal CT scan, which is looking at Eva’s liver in particular. Her liver enzymes have been elevated for a while, and people aren’t delighted with that. Eva cut out one pain med mid-week and we will see if her labs look better Monday (we should have gotten a first look with Thursday’s labs, but they seem to have gotten lost in the maze that is Quest Diagnostics). The CT scan should show any physical abnormalities there.

A colonoscopy with small bowel enteroscopy has been ordered because if you can’t see it with an MRI, you can always go in with a camera and take a look. This is looking, again, for physical features that might lead to pain and trouble feeding enterally.

Meanwhile, Eva is not only getting full nutrition from TPN (IV nutrition) she finds herself somewhat dehydrated, despite receiving 2.25 liters of fluid with the TPN. So we are now infusing another liter of saline either daily or every other day depending on how Eva feels. This also falls into the “somewhat weird” category.

In summary, we still don’t know what’s going on, Eva’s miserable, and completely over being a medical mystery.

Again, this is David writing for Eva.

There isn’t a major update, but it’s been a bit, so an update felt appropriate.

Eva continues to ramp up her TPN. She is in the penultimate step to full nutrition. We expect to hit full nutrition Monday or Tuesday.

The process of ramping up TPN (IV nutrition) is, as I think I have mentioned previously, normally done during a hospital stay. We have been able to avoid this by agreeing to make sure that labs happen every day (except Sundays). Two days a week the nurse comes to us to do various things to Eva (change the dressing on the PICC line, change the extensions, take vitals). Four days a week we drive to Novato (about 40 minutes) to have labs drawn there.

Car rides are tough on Eva. the jostling causes pain and nausea. It is tiring for her. Nonetheless, our constant refrain has been, “it’s better than being inpatient.” And it is, massively. But it is also wearing.

Generally, the labs have looked fine. A few numbers are beyond the normal limits in the labs drawn the last two days, but we don’t think they are anything to worry about. We will likely hear more about that tomorrow, and it may involve slight changes in the formulation of the TPN (this is why there are daily lab draws, after all).

We still have no idea what is causing Eva to be intolerant of feeding enterally. The Stanford GI wants an intestinal MRI. We aren’t sure what she’s looking for but are just grateful that she has an idea and a place to look.

Eva is slowly returning a bit more to herself as her nutrition returns. Bear in mind she was on 60% nutrition or less for about 8 weeks, and for some of that time was down to about 10%. She isn’t yet able to go back to spinning yarn–I suspect it will take both increased nutrition for a bit and a bit less pain.

This weekend a fiber festival is happening about an hour-and-a-half from here. Since the summer, our goal had been to get to that festival. It’s not going to happen. That length of car ride is too much for Eva, much less the walking around the booths and exhibits. This is the one future plan we had made in a long time. We needed to abandon it.

This is how we live life: conditionally. We are not crushed by not being able to go to the fiber festival. A bit disappointed, but we always knew something could come up. We don’t plan ahead (except for doctors’ appointments). We can’t reliably plan what next week will bring, much less a random date months from now. And that’s okay.

Eva often says that other’s can’t and don’t understand our life. And that’s true. It is so alien to the way those who are not chronically ill live. I think we do better with it than we would have expected. We are in place of accepting what life throws at us and adapting as we go. But it definitely requires letting go of expectations or plans.

And yet, hope remains. If not this fiber festival, perhaps the next one. Or Eva giving herself permission to buy some extra roving to turn into yarn for when she’s ready. I take walks in the hills surrounding our home and see young bucks thinking mating thoughts. We move forward, wondering what the future holds.