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Off Topic :
Trying to figure this out

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tushnurse ( member #21101) posted at 10:57 PM on Wednesday, August 24th, 2022

I agree go to the prestigious hospital.
Get a new team, and a new work up.
What you are doing is NOT working.

Me: FBS
Him: FWS
Kids: 22 & 25
Married for 30 years now, was 16 at the time.
D-Day Sept 26 2008
R'd in about 2 years. Old Vet now.

posts: 19509   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
id 8751966
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HFSSC ( member #33338) posted at 2:05 AM on Thursday, August 25th, 2022

I was going to suggest that after you wrote about this hospital not having appropriate catheter supplies and using your personal supplies. If they are accepting Medicare dollars they should not be using your personal supplies. I would absolutely ask for transfer to a better equipped hospital.

I’m so sorry you are dealing with all of this.

Me, 54
Him, 45 (JMSSC)
Married 24 years. Reconciled.

posts: 4776   ·   registered: Sep. 12th, 2011   ·   location: South Carolina
id 8751996
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 WhatsRight (original poster member #35417) posted at 1:29 PM on Thursday, August 25th, 2022

We have weighed the pros and cons between just being discharged, appealing the discharge, or going to a different hospital.

I won’t bore you with all of our "pros and cons" for each option. But…

… We are not going home voluntarily at this time.

… We have decided to appeal the discharge, And see what happens with that. See if they can find anything with some additional time.

… After that, we will have them refer us to another hospital.

I’m not sure how that will go with Medicare. I’m not sure if this other hospital takes Medicare. I don’t know where we’ll get all the money to start from scratch again.

I’m going back upstairs now before the doctor gets here. The asshole who thinks my husband should be released within 36 hours of having a blood pressure of 43/37 at one time, and 235/130 at another time. Hours apart.

I’m thinking about asking for a different hospitalist as well.

I don’t know what to do about the costs with this different hospital, as they are quite expensive. I will be talking with Medicare today about that.

Thanks for hanging in there with me.

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 7634   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8752036
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HFSSC ( member #33338) posted at 2:09 PM on Thursday, August 25th, 2022

I’m not sure that a hospital could survive in this day and age without taking Medicare. Maybe some of the HMO owned hospitals, but I can’t imagine that will be an issue. But then again I never imagined a hospital not being equipped with very basic urology supplies such as a Coude’ catheter either.

Me, 54
Him, 45 (JMSSC)
Married 24 years. Reconciled.

posts: 4776   ·   registered: Sep. 12th, 2011   ·   location: South Carolina
id 8752044
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 WhatsRight (original poster member #35417) posted at 4:02 PM on Thursday, August 25th, 2022

Hospitalist has miraculously decided to bring in a nephrologist regarding blood pressure spikes and dips. The nurse practitioner said they wanted to see if all the BP issues had affected kidneys, but that right now labs looked great.

Will do a work up, more labs, and see what they can figure out. First time in a long time I have felt that something besides just reactive stuff is being done.

Maybe it is just the hospitalists that are less than helpful. (That was me being gracious.)

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 7634   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8752060
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tushnurse ( member #21101) posted at 4:14 PM on Thursday, August 25th, 2022

Im not sure why you think a hospital is more expensive than another.
They are contracted w/ MCR (Medicare) for a set fee that is determined by MCR.

Call the hospital and ask if they accept medicare. they will say yes. I will bet my lunch on that. Now if you have a medicare advantage plan, then you should check to ensure they accept that product, but again, it doesn't matter what they charge, they can only bill what is the medicare allowed amount.

Me: FBS
Him: FWS
Kids: 22 & 25
Married for 30 years now, was 16 at the time.
D-Day Sept 26 2008
R'd in about 2 years. Old Vet now.

posts: 19509   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
id 8752065
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josiep ( member #58593) posted at 6:45 PM on Thursday, August 25th, 2022

Tushnurse is right, Medicare and insurance companies have set amounts that hospitals get paid when they treat their patients, regardless of how "expensive" they are. In some cases, a plan might have "in network" and "out of network" but even then I think the amount you can end up owing is limited. And, many if not most policies have an "out of pocket" maximum and once you've reached it, you don't pay anymore, regardless of the amounts (although not sure that holds true if you go "out of network," depending on your plan. The Medicare statements you get in the mail might spell all of this out for you and it should all be in his account online. (Trying to save you the frustration of calling Medicare because it's been my experience if I don't use the right terminology when I ask the questions, I get nowhere).

BW, 70 YO; M 45 yrs., T 49 yrs.
DDay#1, 1982; DDay#2, May, 2017. Divorced.

posts: 3141   ·   registered: May. 5th, 2017
id 8752101
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josiep ( member #58593) posted at 7:07 PM on Thursday, August 25th, 2022

Hospitalist has miraculously decided to bring in a nephrologist regarding blood pressure spikes and dips. The nurse practitioner said they wanted to see if all the BP issues had affected kidneys, but that right now labs looked great.

Will do a work up, more labs, and see what they can figure out. First time in a long time I have felt that something besides just reactive stuff is being done.

Maybe it is just the hospitalists that are less than helpful. (That was me being gracious.)

Please forgive me for this but do you think maybe you need to have a little chat with those who are minimizing things? And tell them straight to their faces that your H is not ready to die and you're not going to let it happen, that he's been paralyzed for a very long time but the rest of him is hale and hearty and healthy. That he's still very much a vital man, an involved father and an adoring grandfather, the rock of your family and could they please step back and consider whether they might unintentionally be discounting the value of his life or not realizing that this is just a blip and that he plans to live for many more years and you'd appreciate them helping to make that happen?

One part of me says to stand on your tiptoes and wag your finger in their faces but the other part of me says to do it kindly and gently. Not sure which approach (if any) would wake them up to the reality of it.

Is there such a thing as an Ombudsman for quadriplegics (if that's even the right word for his condition and I apologize if I said wrong)?

If you still feel like you're beating your head against a wall, go higher up. Call your Congressman. Call the Swimming Federation or the Special Olympics and ask them for advice on how to help the medical people realize he's not just a paralyzed body, he's a human being. Someone should know how to handle this and it's not fair that you feel his life depends on you fighting battles that no one gave you the weaponry to fight with. Find someone to be in your corner. I think I recall you mentioning you're friend in real life with a couple of people on S.I. - I'm sure one of them would be happy to make some calls and see if there's any assistance available. Even a brochure to give the doctor might help.

I still come check everyday to see how things are going for you and I continue to not have anything to add to what the, as usual, wonderful folks of S.I. are saying. You just hang in there, WR. We're all pulling for you.

BW, 70 YO; M 45 yrs., T 49 yrs.
DDay#1, 1982; DDay#2, May, 2017. Divorced.

posts: 3141   ·   registered: May. 5th, 2017
id 8752106
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josiep ( member #58593) posted at 7:15 PM on Thursday, August 25th, 2022

There is no more formidable disability in medical experience than quadriplegia. In the past, this disability has been approached with an attitude of hopelessness and futility by both physician and patient. The following report which outlines experience over the past two years with a group of 23 patients who were quadriplegic when admitted to the Rehabilitation Wards at Bellevue Hospital refutes the validity of this attitude.

I did a quick Google search and in the first thing I clicked on, this was the introductory sentence.

I've forgotten how to ask permission to post a link. If someone could remind me, I'll see if I can share the article with you. It's from a well known, prestigious medical think tank.

BW, 70 YO; M 45 yrs., T 49 yrs.
DDay#1, 1982; DDay#2, May, 2017. Divorced.

posts: 3141   ·   registered: May. 5th, 2017
id 8752108
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DragnHeart ( member #32122) posted at 8:59 PM on Thursday, August 25th, 2022

Oh I hope I don't get crap for this but what about contacting the Christopher and Dana Reeve Foundation for support? I get their news letters. Seems they would be helpful.

Me: BS 46 WH: 37 (BrokenHeart911)Four little dragons. Met 2006. Married 2008. Dday of LTPA with co worker October 19th 2010. Knew about EA with ow1 before that. Now up to PA #5. Serial fucking Cheater.

posts: 24669   ·   registered: May. 10th, 2011   ·   location: Canada
id 8752130
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 WhatsRight (original poster member #35417) posted at 10:14 PM on Thursday, August 25th, 2022

Tush…

I guess I have heard things through the years, and because it is kinda "famous" that I imagined it would be much more expensive. I have found out that they do accept Medicare.

Josiep…

I haven’t given quite that speech, but I tell everyone who comes into the room about his life since his injury - and, yes, quadriplegic is the right word - (his nickname has been "Super Quad" through his years of competition).

I also tell them he had his own business, and traveled internationally on his own, did independent transfer to the bed, to the shower, on a plane etc. I explain that his present weakness / struggles are only recently.

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 7634   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8752145
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 WhatsRight (original poster member #35417) posted at 10:43 PM on Thursday, August 25th, 2022

The kidney specialist was just here.

He said he wouldn’t give H high BP meds because it would make it dip too low…and, the same for low BP meds - they would make it spike too high.

I asked about going home, and how would I be able to correctly deal with the situation.

He said he didn’t really know, because he has never seen this before! WTF!!!

We can’t catch a break. He said he would call our urologist to see what he had to add.

It’s weird…in past visits (in the recent months), sometimes the nurses want the cathing process to be "totally sterile". Others were ok with just clean. Some wanted to do it themselves. Some were ok with me doing it and just letting them know how much.

Until today, this trip, all the nurses wanted to do it all themselves and make it sterile.

Today was our first time with this nurse, and she not only told me to just do it if I wanted, but didn’t even ask my process. And she doesn’t care if it is every 4 hours or not. (Something the ID doc told me to do.)

It almost seems like she figures we’re going home soon and it’s not really important.

Maybe it’s just me. I’m pretty tired.

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 7634   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8752157
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tushnurse ( member #21101) posted at 2:00 AM on Friday, August 26th, 2022

please please please take him to the prestigious hospital next time.
You need a fresh set of eyes and better care thatay consider unusual things that could be contributing to his labile pressures.

When they get those crazy reading are they double checking with a manual pressure in a different limb? Or are they using and automatic cuff and just entering whatever comes up? There seems to be a lack of critical thinking skills there. Along with routine equipment and higher standards of care. Being a quad and the whole urinary retention and intermittent cathing can be contributing to the extremes in pressures but shouldn't be the crazy numbers you report the low pressures would limit brain and heart function.
Then we have this other issue you need to ask for a urine sample 24 hours after completing antibiotics to make sure that the infection is actually gone.

Me: FBS
Him: FWS
Kids: 22 & 25
Married for 30 years now, was 16 at the time.
D-Day Sept 26 2008
R'd in about 2 years. Old Vet now.

posts: 19509   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
id 8752184
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HFSSC ( member #33338) posted at 2:05 AM on Friday, August 26th, 2022

I had this thought last night.

Slight T/J here

And I hope nobody here gets offended when I say what I’m getting ready to say. But travel nursing is hugely detrimental to patient care. In fact the travel nursing industry is decimating health care in many settings, especially acute care and long term care/SNFs.

I know a couple of really good nurses who got burnt out and took on travel assignments with fairly long (6 month) contracts. But I know a whole lot more who skated by when they worked with me and are now skating by in different places every 6 weeks. For absolutely killer $. It’s become a vicious cycle where staff leave hospital A or nursing home Z and get a 10K bonus to sign up for a travel contract at Hospital B or Nursing Home Y. Meanwhile somebody from Hospital B takes the same bonus to go across the country and work for Hospital A. Lather, rinse, repeat every 6-8 weeks with new staff. So nobody has time for a decent orientation. There’s no “we do it this way here.” There certainly isn’t going to be any consistency from one day to the next, one shift to the next.

This happened almost 20 years ago and it was rare at that time. JM had major surgery after having been on an extended release morphine 60 mg per day. 60 MILLIGRAMS of MORPHINE daily. And after having a spinal surgery performed from his abdomen with a 6” vertical incision, he was placed on a PCA pump with Demerol at the lowest possible setting and the longest possible interval. He was in agony all night. At one point I demanded the anesthesiologist be paged and the nurse, a traveler, didn’t want to wake him up. I said it was her choice because the next thing I was going to do was dial 911 from the room and tell the dispatcher my husband was being abused and needed to be transferred immediately. And the next calls I made were going to be to every TV news station in a 50 mile radius. So when the anesthesiologist got there

he bumped the PCA settings up but at that point JM was beyond control. The surgeon came in for rounds about 530 am and asked me how long JM had been like that. I said all night. He left the room and I could hear him screaming at the nurse from all the way down the hall. He came back in with 2 syringes and gave JM morphine and Valium IV to get him back from outer space.

I tell you all this to say it is not surprising to me but it is very disheartening as someone who has put my entire life and heart into health care. You have the right to know who is taking care of your husband. Ask if they are permanent staff or travelers. Ask if you could see the policy/procedure for In/out caths in that hospital.

I keep hearing you say that the (urologist? Infectious disease?) doctors don’t want to put in a foley or suprapubic. But if he’s being cathed every 4 hours that is 6 times of the area being manipulated, a foreign body going up and then back down the urethra. Urine collects in the bladder with that the concern of bacteria multiplying. It just seems like trying that couldn’t possibly be worse than what y’all have just been through the past few months.

I will be praying for answers and peace and a clear path ahead with at least one doctor you can trust and understand.

Me, 54
Him, 45 (JMSSC)
Married 24 years. Reconciled.

posts: 4776   ·   registered: Sep. 12th, 2011   ·   location: South Carolina
id 8752185
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tushnurse ( member #21101) posted at 1:15 PM on Friday, August 26th, 2022

Say it louder so the people inthe back can hear HFSSC.

I have been fortunate that the system I work in actually did a wage adjustment back in February to retain staff, and they were beyond fair with it.
I was starting to look for a new job but decided I was good with what they wanted to pay me.

They also cut way back on travel contracts.

In my area the contracts tend to be for longer periods, like 6 mos instead of 6 weeks. which actually allows that travel staff to get trained and work well. But as someone who did staffing agency work back when my hospital went to all 12s, I can tell you it takes a good nurse w/ a lot of experience to be able to go to a brand new facility, and care for properly and meet all their requirements.

Me: FBS
Him: FWS
Kids: 22 & 25
Married for 30 years now, was 16 at the time.
D-Day Sept 26 2008
R'd in about 2 years. Old Vet now.

posts: 19509   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
id 8752221
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 WhatsRight (original poster member #35417) posted at 2:18 PM on Friday, August 26th, 2022

The hospitalist that I HATE was just here.

He said he was going to discharge H today.

I said I hadn’t heard from the nephrologist. He said he would get him to come by.

I asked what I should do WHEN (not IF) the stomach pain comes back when we get home. He said to come back to the er.

I asked how to care for the huge flux of BP at home. He said to send him to a facility. Get a referral to a GI dr. Go to another hospital.

H is not being a part of the discussion.

There were voices raised. He kept interrupting me to the point that at one point I said, "Excuse me! I’m talking!"

So he said he will send by the nephrologist and GI docs for me to question. And they would do some test with the kidneys.

We will probably be discharged tomorrow.

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 7634   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8752269
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 WhatsRight (original poster member #35417) posted at 3:25 PM on Friday, August 26th, 2022

Change of plans. We are leaving.

Had a (heated) conversation with H. He has no input, except to vaguely insinuate that he wants to go home. He always leaves everything to me. Says I "know" more than he does. Duh. Conflict Avoidance raises its passive aggressive head.

I told him he could either be a part of this struggle with me of what to do next, or we should just go home.

So he told the nurse we were wanting to leave. Then in comes the asshole hospitalist and denies that he has been trying to get H discharged. Says, "So you don’t want the (whatever it was) kidney associated test?" I say, "No, you only ordered it under duress from me."

He of course denied this. So I just said, "He (pointing to H) wants to go home, and it is up to him."

So he asks H if that is what he wants, and H says yes.

So we will be leaving as soon as the paperwork is processed. From past experience, I’m guessing 4 hours. But as badly as they want us to leave, maybe 15 minutes.

Then off to the house to see if it is still standing…my sons have been fighting.

Then 2 or 3 days of H sleeping, then one night he starts getting extremely hot…then belly pain, then pain meds that don’t work, then…

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 7634   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8752319
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HFSSC ( member #33338) posted at 3:35 PM on Friday, August 26th, 2022

Before you leave, or as soon as physically possible, request his medical records.

When you need to go to ER again, do not go back to that same hospital. Go to the "prestigious" one.

I am so very sorry for all of this on you.

Me, 54
Him, 45 (JMSSC)
Married 24 years. Reconciled.

posts: 4776   ·   registered: Sep. 12th, 2011   ·   location: South Carolina
id 8752320
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josiep ( member #58593) posted at 3:36 PM on Friday, August 26th, 2022

The hospitalist that I HATE was just here.

He said he was going to discharge H today.

I said I hadn’t heard from the nephrologist. He said he would get him to come by.

I asked what I should do WHEN (not IF) the stomach pain comes back when we get home. He said to come back to the er.

I asked how to care for the huge flux of BP at home. He said to send him to a facility. Get a referral to a GI dr. Go to another hospital.

H is not being a part of the discussion.

There were voices raised. He kept interrupting me to the point that at one point I said, "Excuse me! I’m talking!"

So he said he will send by the nephrologist and GI docs for me to question. And they would do some test with the kidneys.

We will probably be discharged tomorrow.

I'm so sorry to hear this. That hospitalist is obviously among the health care worker segment who don't understand that quadriplegics are full human beings who are entitled to the same care and treatment as non-quadriplegics. The article I quoted from above was spot on and it's apparent that there's a great need to educate more health care workers about the realities of quadriplegia.

In the meantime, is there a social worker at the hospital who could help you find another doctor? I know you live in SE USA - if you're at all close to Jacksonville, FL there's a world class Mayo Clinic there and I believe they have a large spinal cord injury department. If nothing else, someone there might be able to give you ideas on how to get a good doctor who provides top notch care for quadriplegics in your area, who takes the initiative to call other doctors for advice or ideas, who cares for the whole person or at least coordinates the patient's care so the whole person is kept whole.

You have 3 precious sons, you have other family, you have grandkids, you have a home, you have a community. What the staff at your hospital is doing is cheating YOU out of days, weeks, maybe months of living your life; denying you the time to spend with/talk to/write to your incarcerated son; keeping you from playing with your grandchildren. And quite frankly, keeping you from being able to have a normal relationship with your husband because you're both exhausted, stressed and worried and you're in Limbo - how can you possibly have a normal conversation in those circumstances???? It's not like you aren't two level-headed reasonable people who will cope with the bad news when the day comes but it's not that day yet.

And that's all on them because they don't have the intellectual curiosity to get to the bottom of things, to figure out the problem, to try to fix the problem. You and your husband and your sons and your grandchildren deserve better.

BW, 70 YO; M 45 yrs., T 49 yrs.
DDay#1, 1982; DDay#2, May, 2017. Divorced.

posts: 3141   ·   registered: May. 5th, 2017
id 8752322
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josiep ( member #58593) posted at 3:41 PM on Friday, August 26th, 2022

I just read your update.

WR, you're a woman of very strong faith.

Now is the time to lean on your faith. Get some sleep and let God go to work on this.

BW, 70 YO; M 45 yrs., T 49 yrs.
DDay#1, 1982; DDay#2, May, 2017. Divorced.

posts: 3141   ·   registered: May. 5th, 2017
id 8752323
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