As many of you may know from my Facebook posts of the past week, Patty spent Tuesday through Friday at Edward Hospital. The reasons were twofold. First, she had to have a new enteral feeding tube placed, because her existing tube fell out (a problem more common than one might think). She would likely have gone in, anyway, though, because she was severely dehydrated and malnourished because of a recurring inability to keep food down.
In the days before Patty went to the hospital, she barely ate at all, because there seemed little point: whatever went down soon flew right back out. As I’ve shared before—but often feel compelled to repeat—there’s no evidence her challenges are a psychological phenomenon; or, to put it another way, she’s not “doing this” to herself.
The reasons remain a mystery to both doctors and to us, although we’ve long believed an autoimmune condition may be a player. I had even convinced local doctors that a specific condition being researched at Mayo Clinic, called autoimmune GI dysmotility (AGID) might be behind her travails; alas, in spite of the docs’ efforts, Mayo opted NOT to see Patty.
As you might expect, Patty’s blood counts, enzymes and organ function while hospitalized this past week were all haywire. Fortunately, and as expected, these improved steadily over the course of her hospitalization. Even after all these years, I’m amazed at how much and how quickly a bag of saline can improve a person who, before, seemed in dire condition.
At each stage of this recent struggle we’ve had to deal with a complicating factor, which Patty has given me her blessing to discuss--after all, perhaps her stories may help others.
Through Patty’s two months in hospital last year, and again this past week, Patty developed a temporary but fairly intense form of dementia associated with being institutionalized. Last year, I found it deeply frightening—particularly as I had seen Patty through many hospital stays without any such compromise. This time around, I at least recognized what I was dealing with, although I’ll be honest: it’s no less off-putting.
In short, Patty drifts into a made-up world where she perceives she’s being kidnaped, moved and/or otherwise mistreated, or visited by people alive or dead who behave in unpredictable and puzzling ways. When corrected with the truth, she often believes I and others are gaslighting her; in fact, this time around, she started reaching out to other people because she no longer trusted me.
I feel SO bad for Patty when this happens, because, to her, it’s 100% real, upsetting and terrifying. Alas, it’s also dangerous…she fell once at the hospital, and once since she came home, because she forgot she’s unable to walk. Fortunately, she didn’t injure herself in either instance.
The silver lining? The problem starts to resolve itself almost as soon as she leaves the hospital.
Since coming home, Patty has not been doing well, to the point I’m constantly flip-flopping whether or not to return her to the ER. She is adamant about not wanting to go, and my fears about managing her care when she’s mentally compromised (which will certainly amplify if she’s brought back in) certainly factor in.
As I write this, Patty is experiencing steady but bearable pain in her abdomen where they inserted the tube (she had no such pain in the past, although docs didn’t seem concerned this time). She has pronounced edema, to the point the arches of her feet are filled with fluid and she has no discernable ankle bones; I’m hoping I can resolve this with diuretics, because fluid overload is a real risk to her heart. The feedings are wreaking havoc with Patty’s digestive system—she’s vomited almost as much fluid as I’ve been able to introduce through the tube. She’s been coughing and dealing with chest congestion--which is, needless to say, a bit concerning knowing she recently shared a hospital wing with COVID-19 patients; until I see other evidence, though, I’m going to presume the cough is from reflux, because why jump into a fresh rabbit hole of worry?
Overall, Patty’s just feeling exhausted and miserable.
After the weekend, I’ll be in touch with Patty’s GI doc to explore next steps, with the real hope some minor adjustments may help speed her recovery. Otherwise, my guess is I’ll be providing fresh updates from the hospital.
Thanks to all for your love, prayers, kind thoughts and support. I wish I had sunnier news to report, but c’est la vie—others out there are dealing with far worse-- especially this year. Our biggest objective right now is to make sure we don’t spend consecutive Christmas Days in the hospital. Fingers crossed and knocking on wood!
