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Question about hospital patient advocacy for my mom...

random_thought

Brilliant_Rock
Joined
Jul 5, 2010
Messages
1,065
So I was trying to find the thread about caring for elderly parents but could not find it so apologies in advance if this is in the wrong place.

Long story short- my mom had a stroke about 7 weeks ago. It affected the left side of her brain and she is working on physical therapy. She has been set to be released about 5 times now but something keeps coming up. She also has cancer and has been receiving for chemo for that and has diabetes as well. This is the update my dad gave us today and I was hoping somebody here might have some advice. I'm about 1500 miles away from them or I'd be there talking to the doctors as well.
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Another frustrating day at the hospital. They took R for an xray of her upper body to see if the shunt was collapsing. I informed them there were no shunts in R.

They insisted there was. I insisted to go along. When we got there, the xray technician wanted to know why I was there and I said to observe what you do. She said I could not be there, I told her I would be there. We had a few more words.

I went in. They did and xray from R's brain to her lower abdominal cavity.

Guess what, no shunt.

So I said, is it clear or would it show up like the tube from her portal. They said it would show up like the tube from her portal. So I said, humm

The doctor was upset when we back. I informed him he was not as upset as I was. I asked where he got the information that R had a shunt in her lungs. He just looked at me.

Ten minutes later another doctor showed up and I explained what had happened. He blamed it on a computer glitch. I told him I was not talking to a computer, but to the doctor who was examining her lungs.

We got that straighten out at 2:00. From 8:30 until 2:00 they kept insisting there was a stunt.

Any suggestions on how to handle these people.

R was exhausted.
 

jstarfireb

Ideal_Rock
Joined
Mar 24, 2007
Messages
6,232
It's hard to tell since it's not a first-hand account, but it sounds like faulty information somehow got into her chart, or the X-rays were ordered on the wrong patient. A shunt (more specifically, a VP or ventriculoperitoneal shunt) goes from the fluid-filled spaces inside the brain and drains the cerebrospinal fluid into the abdominal cavity. This is necessary if too much of that fluid has built up and is putting pressure on the brain. The type of X-rays they did is called a shunt series, and they are done to determine if a shunt is open vs. blocked and not functioning properly. Here's what I'm thinking happened: either someone wrote in her records that she had a shunt (which was incorrect), or another patient on the same ward has one and the X-rays were accidentally ordered for your mom instead of that patient.

The good news is that the only harm that came from this mistake is unnecessary radiation exposure - and the radiation exposure from an X-ray is luckily not very significant. For example, a chest X-ray is equivalent to the extra sun radiation exposure you'd get from spending a week in Denver. So aside from a little radiation and a lot of frustration, luckily not much harm was done (as in surgery on the wrong body part or something). I say this not to minimize the frustration, anger, or loss of confidence in the hospital that your father is feeling, but instead to reassure him that it wasn't very harmful to your mother.

Hospitals usually have a department of patient advocates who can help listen to patients' and families' concerns and smooth things over with staff. At my hospital, it's called Guest Services. I think your father should speak with them, tell them his concerns, and make sure something like this won't happen again. I think it's also well within his rights to find out how it happened, i.e. get a better explanation than "a computer glitch." The easiest way to do this is to ask the nurse caring for your mother if the hospital has such a department, and ask how to get them in touch.

Good luck!
 

random_thought

Brilliant_Rock
Joined
Jul 5, 2010
Messages
1,065
Thank you for such an in depth response! I definitely contacted the patient advocacy at her hospital and hopefully that will help in the future. I think we're all just frustrated because she is just so tired and exhausted of that hospital (who wants to spend 8 weeks in the hospital, definitely not me!) that when they do mess things up it just makes it seem like it's going to take that much longer for her to be discharged :(sad She's been told she would be released 8 times now only to have set backs so I can only imagine how frustrating today was for them both :nono:
 

jstarfireb

Ideal_Rock
Joined
Mar 24, 2007
Messages
6,232
That definitely sounds frustrating. I hope she gets home soon!
 
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