Physical Rehab, Reinvent, Retrench: Stupid Rules

January 22, 2012 at 7:25 AM (Physical Rehab) (, , , , )

Early going at rehab was all about the rules.  There was the bladder scanning every night for three days. WTF?  There were the usual annoyances about drawing blood at 5:00 am.  (“It could take six to nine tries.”  “No, I can do it.” )resulting in giant bruises (two days later), blown veins and irritation.  My vein walls were weakened by part of the chemo regimen all those years ago, and that means a simple blood draw can evolve into a painful circus.

The late husband who was in and out of hospitals for most of his life, patented the Brian Richard Flynn Guidelines for Bypassing Hospital  Stupid Rules, and I  learned most of them, and proudly execute them when able.

(thankfully this rehab place didn’t care about the two rules below anyway, but you get the idea):

For example:  Wear part or all of your own clothing rather than gowns or in addition to gowns.  The staff will freak out and tell you to stop.  Continue.  They will then freak out and tell your doctor.  If your doc is cool, they will say… “Let them wear the stuff. In their particular case the benefit outweighs risks.”  If not, then you got through three or four days of wearing clothes.

Ignore visiting hours.  Act as though you belong there.  Make sure you and the patient both show the benefit to mood, comfort, and even better vital sign results as the result of you staying.  Be polite, but firm.  Say you’re staying.  Nobody wants to call security on a devoted family member who is quiet and making no disruptions (but very well might start disrupting if not left alone)

But the thing about the bed…

I couldn’t get into it unassisted.

There are what I consider to be good rules in the hospital.  Listen and discuss and suggest with the docs and nurses.  This is a good rule.

Generally,  attempt to do what they tell you to do as far as treatment.  It makes the atmosphere less charged, and wonder of wonders makes it likely that you will have some success with the issue that brought you.  Not to mention that they are ostensibly the medical experts.  Unless you’ve gone to medical school yourself, they should know more than you do.

There’s a Stupid Rule.  Patients deemed at risk of falling *must* hit the damn call button for an assist every time they have to get out of bed or transfer one place to another.  After three days, they eased up on the daytime transfers, but never at night.  Even though it was clear to everyone that getting out of bed was no problem for me.

(I do understand that all of these rules technically serve a medical or litigation avoidance purpose.  I just think they’re dumb.  Ignoring them contributed to my sanity.)

I hate hitting the call button.  I respect the work good, competent nurses do, and if I can do something myself, I know there are patients in worse shape that they should best be spending their time on.

So I blew part of that rule off.  It’s a Stupid Rule.  I would get up out of the bed on my own at night, use the restroom whatever, and *then* hit the call button  because of the damn bed.

I’m short, and heavyset and on top of that my legs are shorter than they should be.  so the bed was too high.  They had to deflate it, and even then I could not raise my legs high enough to swing over…so they had to grab and at the right moment, put my legs back in the bed, and then re inflate it under me like some undersized waterbed.

There was some mild freaking out about this, but it did subside.

If you have a hospitalization, asses the sanity of the support staff and then after the first 24 to 48 hours categorize the rules into: 1. Agreeable  2. Don’t like ’em, but I will follow them,  recognize their value.  and 3.  Stupid and inapplicable in my case, and should be circumvented for my mental health if possible.

You’ll feel better.  Even if the staff doesn’t.  They’ll get over it.  It’s why they get paid the big bucks.

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Physical Rehab, Reinvent, Retrench-Insanity

January 20, 2012 at 8:17 PM (Uncategorized) (, , , , , , , , , , , )

My legs are not wrapped.  This vital process will not happen the way I was told.

Because of my cerebral palsy, I cannot wrap and unwrap by myself.  there may be a way to figure part of the unwrapping, which I will work on tomorrow, but the wrapping is flat out impossible.

I was told my aftercare until I graduate to compression socks would be covered under Medicare part A.  That someone would come to the house and unwrap my legs, help me clean them (not entire bathing, simply my ankles and feet. Rewrap my legs since they would be certified to do it. )

Now, the home health care agency will not wrap my legs (its a non-skilled service)

There is no way to send someone certified to wrap that would be covered under Medicare part A

I’m supposed to be set up with an outpatient clinic instead, that Medicare may not cover, even under part B.   I advised of the transportation problem making the cost of that prohibitive, they said then I’d have to be in a rehab place or an SNF [ even tho medicare wouldn’t cover a return—-] until I graduated to compression socks, or live with someone who could transport me.  I won’t go into details here, but living with my parents would be, um…problematic and risk my mental health.  I don’t mean that snarkily or as satire.  It’s a real issue.

I am not leaving my home.  I worked too hard to get here.

I AM NOT LEAVING MY HOME!  Not over a 45 minute process.  I AM NOT LEAVING my home.

So, it’s be institutionalized or lose all the progress and leave myself at risk for congestive heart failure, or come up with a way to be transported to these lymphadema clinics every day, pay for that, and pay for either 20% or 100 % of those costs.  Even having Medicaid waiver fixed would not necessarily solve this problem.

I’m contacting the patient ombudsman for Medicaid in my state, to get the transportation set up, at least.  I’m also contacting my church.

But that has to wait til Monday, and the damn legs have already begun to ‘reinflate,’ because all the home care folk can manage is a simple ace bandage.

And yes, I’ll be dumb enough to stay at risk to stay in my home.

There’s such a thing as quality of life and I will not surrender it to bureaucratic forces that cannot speak to each other or bend to necessity.

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