It started Friday. He fell twice. Then that evening his peg tube got plugged. Then he got diarrhea, and a fever. The fever resolved, but the diarrhea did not. He slept the whole day Monday, and Tuesday after brief periods of being awake. Didn’t want to go to the ER. Tuesday evening I woke him up to try and get meds and fluids down him. He couident get out of bed, sit up, or walk. My son and I could only get him a few feet to the walker to sit.
I called my daughter and her husband. Between him and my son with a little help from me (daEughter is pregnant) we got him to the car.
ER all sorts of tests scans etc. he’s getting confused and annoyed that I couldn’t find the cookies someone made us. I went back the next day to find they had transferred him to a bigger hospital and hour away because his pressure wouldn’t stay up and they needed him to be observer or something. They tried calling me and I missed the calls.
I drove the hour to the other hospital. He was in ICU and barely verbal. I talked to a resident to give him history.
Today, my son and I went back, and were asking questions. Why weren’t they giving him parkinson’s med? That might be why his confusion was getting worse.
The doctor then said well he’s very sick. And I said basically what’s wrong with him. He said Hubster has pneumonia and sepsis. Wow, why hadn’t anyone told me this at the first or second hospital? That was why his pressure wouldn’t stay up. I thought it was a medication issue because he takes two to keep his pressure up because of the parkinson’s meds. And the last time he was off parkinson’s meds for several days he sort of slipped into a fugue state. NO. one. told. me.
I hope he makes it through. He’s very fragile. Some changes need to be made and he will not be ok with them.
Tl;Dr Shouldn’t the hospital tell you a diagnosis at some friggin point? strong text
I am so sorry, @Sylvanz. This is tough stuff to get through. The sepsis is particularly worrying, as I’m sure you know. FWIW, my father, who turned 94 yesterday, beat it last year. The antibiotics they have now are amazing.
Hang in there, share what is helpful for you here and know that we are pulling for you and your husband. Hugs to you, as many as you need.
A few years ago, at age 83, my fragile mother beat sepsis. Sending good thoughts your way!
And it’s crazy that they didn’t tell you! It’s in the Patient Bill of Rights, the right to know the diagnosis or for it to be given to a legal representative: Patient Bill of Rights | Clinical Center
Thank you all for your thoughts, hugs, etc. I needed to get it out in writing. All the staff has been very nice, and I felt sort of stupid when the doctor told me he was very sick 'cause you know duh he’s in ICU. But the other hospital implied that he needed to be observed because of the IV BP meds he was on. I really thought it was medication related and perhaps some residual illness. I just should have known, but you know none so blind. As of 11 pm nothing much has changed according to his nurse. Fingers crossed that he turns the corner tomorrow.
A few years ago my father-in-law, who lived alone, sort of disappeared for a few days; his neighbors didn’t see him on his usual walks and he didn’t answer the phone or the door. A friend of his finally called the fire department, who broke in and found him in bed. He insisted that he was fine and just had a cold, but when asked to get up, he couldn’t get out of bed. He was taken to the hospital and diagnosed with sepsis. He was hospitalized for a few weeks, but eventually did recover. Sepsis is very serious, but recovery is certainly possible.
My late wife ran through a bout of sepsis very early in her decline. It became a very close call with about 10 days from going acute to turning around and beginning significant recovery. She went on to live a few more years not really the worse for wear from the experience until the cancer finally finished her off. She was younger than Hubster, but also immunosuppressed, so perhaps a wash in terms of their relative prognoses.
Real scary, but coming back from sepsis despite a “medically complex” background has been done many times in many places. Take heart in that.
And gaah how frustrating to deal with having to pry minimal dribbles of the whole picture from a dozen sources at two facilities. Modern medicine is great, but only you and the pt. know the whole picture, and they ain’t talking. Every individual on the staff side is just one tiny task in the giant assembly line of modern medicine. “I only install left front door handles; I don’t even know what model of car this goes on.” could be the industry motto.
It works, and often delivers miracles, but it’s kinda precarious and annoying as hell.
Good luck, big hugs, and I’m sending my best positive vibes to you both.
Sucky situation. I’ll leave others to comment on the medical specifics, since I don’t have too much experience with these particular issues.
Dealing with the hospital machine can be frustrating. My father was extremely sick during the pandemic - not covid related, but the hospital was overworked and things were skipped and missed.
Having someone there to “manage” the situation helped us a lot.
We had access to his online chart with the hospital - Cleveland Clinic uses MyChart, which is based on Epic. We wouldn’t get most of the doctor’s notes until after eventual discharge, but we did get test results fairly quickly. When we saw results, especially ones that seemed different/meaningful we could flag down a nurse to get attention. This short-cut the “someone will eventually see things and put in an order” process, and allow the hands on nurses to start pushing for things when appropriate. They care and often know what needs to be done, but have to wait for orders..
When tests were being ordered, we would ask what the results could mean, and what actions could happen based on them. This helped us follow up after the tests.
ETA: You may be able to get an idea of when doctors make rounds, and schedule visits then. You likely won’t know the exact hour, but “they come by late morning” or “sometime in the afternoon” might be helpful if you can’t be there all the time, and want to be able to talk to the doctors directly.
Yep. My dad, who also had Parkinsons’ Disease and diabetes ended up with it two or three times (he had CVI in his lower legs), and recovered each time. COVID is what ended up getting him; it damaged his lungs enough that he ended up with pneumonia.
Don’t ever let yourself feel this way when grappling with the Medical System. Seriously, just don’t!
@Beckdawrek knows…she gives good advice. Connecting with the hospital’s social worker is excellent advice. Those people know everything!
You are going to have to become a lot more assertive than you want to be. (Including with the patient!) And a lot more pro-active than you probably feel you should have to be. But that is the reality.
Speak up. Ask questions. Even questions that you’re afraid are stupid questions. Even if you get a sigh and an eyeroll when you ask the question. Nail everything down. If the person talks too fast, ask them to repeat slowly. Carry a notebook and write down what the medical personnel tell you and get their names, first and last.
You will not be sorry that you did all of this (even though you don’t want to and believe you shouldn’t have to), but you might be very regretful in the future if you don’t speak up.
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