4-29-22 Back in the hospital, out of hospice

(Tricia)

Things just never stop changing. Yesterday, Linda developed a violent case of diarrhea. As I mentioned in the previous post, the hospice nurse didn’t offer me much in the way of guidance, other than to tell me that it was likely “a stomach bug” and that I “was doing such a good job.”  Overnight to this morning, the problem only got much worse. This morning, Edna, the wonderful caregiver that we have been working with, told me, “You have to do something. She can't go on like this.”  I called hospice again, and the hospice nurse on call admitted that this was beyond the parameters of the help they can provide. The nurse suggested I call an ambulance and have Linda readmitted to the hospital. With her hospital admission, Linda’s hospice status will be revoked.

To me, it’s the ultimate irony that a patient can be too sick for hospice. Yet, here we are, trying to get Linda well enough for hospice.

Marilyn and I are now with Linda in her room in the ER at Missouri Baptist and we just spoke to the doctor: Her C-Diff is back with a vengeance. He reassured me that I did the right thing by having her readmitted to the hospital. In his words, “‘Do not resuscitate” is NOT the same as ‘do not treat.’ And C-Diff, he said, is treatable. And it was something that we could not let go on in a hospice environment. Linda is so dehydrated that they have her back on IV fluids to try to bring her back to baseline.

Linda will be admitted to Missouri Baptist this afternoon, and she will be back under the medical supervision of her original infectious disease doctor.  They will switch her from amoxicillin to a different antibiotic that will target the C-Diff, while also keeping an eye on the hip. He also mentioned that, finally, Linda might get a simple procedure called a fecal microbiota transplant. This treatment might sound unappealing on its face, but in reality, it's a quick, simple treatment that most often wipes out C-Diff almost immediately.  It's a treatment we wanted her to get last year, but was told by the gastroenterologist that it was a “last resort” treatment, after he tried everything else.  Well, “last resort” is where we are.

I am so upset that we could not manage to keep her comfortable at home for even two weeks before another trip to the hospital was necessary. But I simply could not manage to keep her comfortable while also battling C.Diff, which is a horrible condition that does not get nearly enough attention. We all need to pay more attention to keeping our guts healthy and filled with good bacteria. Without that good bacteria, C.Diff can move in and be nearly impossible to eradicate.

As always, we will continue to post updates here as things change. Please continue to keep Linda in your thoughts and prayers. 


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