hospitalization #6

Emma was admitted on Sunday for the same reason as the previous five times. This is the first time we have used palliative care, though, and they are SO AMAZING. (Also, in mid-October, it will be one year since all of this started.)

Previous to this, we're used to telling the doctors (not palliative care) that Emma is struggling, unable to eat enough, and it taking quite a while for them to agree she needs to be admitted. Even then, it was usually us deciding to take her to the ER and getting her admitted because we couldn't keep waiting.

So, I kind of expected a really slow response this time, too, but that's not what happened. We called palliative care, they did a video chat, and they noticed that there was no plan for Emma's care. They said, "The do nothing approach with Emma doesn't make sense to me, especially with her Fanconi Anemia diagnosis and her transplant history" then <insert a lot of information> that left us feeling really validated, not alone in our bad experiences, and finally, really, listened to.

It's been a *tremendous* relief, which has led us to putting a pause on transitioning care to the other hospital system (which we were trying to do before this because Emma decided she wanted to switch to a different set of doctors) while we see how this goes.

Palliative care 100% agreed that Emma showed zero signs of having an eating disorder. They also didn't understand why they aren't giving her TPN/PPN during the times she can't get nutrition in. These are things that we've been asking for and wondering about, too.

HOSPITAL STAY

This time Emma was admitted under a team of hospitalists. We still had to go through the ER, but that's just because it's the required method to get admitted. The hospitalists work with palliative care and have been an incredibly welcome relief themselves, too. When we talk, they actually listen. It's really novel how it works! ha. Instead of feeling rushed, they seem to purposefully be taking the time to figure out what is going on with her. Hopefully this continues throughout the whole stay, and they won't send her home without a plan in place to help her. I guess we'll see.

She's lost 5 lbs over the past three months, which, when you weigh 68 lbs, that's a lot. They are also currently observing her, trying to see how much she can do by mouth. They want to document what she is able to do herself. Then they are considering giving her a PICC line (she's refusing the idea of a central line on her chest, like during transplant), so that they can give her TPN/PPN at night, as needed. But this is still being discussed with her care team. Palliative care can't 100% run things on their own. It's a team approach, hem/onc & GI included, it sounds like. But palliative care is our voice right now, and it's so helpful. We're cautiously watching to see how this setup goes, and if it gets her the proper help or not.

INTESTINAL FAILURE?

When everything is pureed, no meat, and some other things (low fat, low fiber, avoiding dairy, doing six tiny meals instead of three), her GI system can do pretty okay. But no matter how well it does, she can only do around 850 calories on a good day. Then we run one bottle of formula, plus her daily water, through her feeding tube 24/7, which gives her 500 more calories. (She can never handle her formula faster than 15-20 ml per hr.)

However, when we feed her food that her body doesn't like, which happens sometimes when we try a new meal, her system stops being able to function very well. Her ability to eat, as well as her ability to pass stool, is greatly reduced. It becomes the lamest game of trying to figure out how to give her enough laxatives (on top of the daily laxatives she already takes) to get stools moving again. If we are successful quickly, she can usually pick back up and get going again with eating. But when this takes very long to clear up, by the time we do get her cleaned out, it's like her GI system is exhausted, and she can't tolerate feeds (through her feeding tube) for a week or two, even if her system is empty. And her ability to eat by mouth diminishes somewhat but continues. Like, this time, she dropped down to 300-600 calories by mouth.

This is what she's always done, and this is the part that the doctors haven't understood and end up blaming her for. But palliative care suspects she is actually in intestinal failure, and the reason she can't handle feeds, even when it's empty, is because her GI system had gotten overwhelmed with the food it couldn't handle, and after the effort to clean it out, it truly is exhausted and takes time to recover.

Regardless of the cause, it's this phase we need help with.

GASTROPARESIS?

Also, it seems like the diagnosis of gastroparesis has somehow, possibly, gotten lost. No one seems aware of this diagnosis. We had ordered copies of her medical records, and it's not listed anywhere in there, and we are sooo confused about this part.

When they did the swallow study in December, it showed a delay in her stomach. Then those four GI tests back in March, they said she had "delayed gastric emptying," and then referred to it as gastroparesis after that. But it took the motility specialist time to finish looking at all the results and more time to write his reports. And those reports, we recently discovered, said that things were normal. So, basically, he had told us one thing verbally (gastroparesis) but wrote "normal" in the report. And it wasn't just that one time, either, that he referred to it as gastroparesis. It was many, many times!

I've been discussing this with the other doctors, trying to make sure this isn't part of the confusion. Hopefully this part will have a happy ending and not add more to our frustration with GI.

Hope this made sense. It's getting late, so I'll post it! Hope everyone is doing well. ❤️

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