Nick's Crusade

Because Medicaid makes getting on home care waivers ridiculously complex and difficult, whereas institutionalization is easily funded, I ended up here, at a city rehab hospital while I wait for home care to be set up for me in Manhattan.  This is my waiting period.

Institutionalization, the most costly, elaborate and inconvenient option, is the easiest to get (in Medicaid law) because the 1965 Medicaid statute hasn’t been updated since technology advanced to allow severely disabled people to live at home.  The best, newer services (home care) are a long road to get to, whereas they’ll happily give you an express ticket to the most difficult, costliest, dinosaur services (institutionalization).  THE SYSTEM IS BACKWARDS, in an almost Lewis Carroll kind of way.  I’m wondering why “fiscal conservatives” would rather keep me in a $1000/day hospital instead of home care for half that.

So for now, I’m living in what I’ll call the “Alcatraz Institute for the Permanently Crippled,” in unit A13, until I get home care.

Ah, lucky unit 13, an alternate world within this alternate island universe.

By accident, I ended up at the North campus.  The South campus, which has a long history, was at the forefront of the advent of mechanical ventilation during the polio epidemic (picture wards filled with iron lungs) and then the invention of the ventilator.  Dr. Alba Dumbledore saw it all happen.  She’s been at the South campus, which probably has 200 vent patients now, for over 50 years.  She was on first name basis with the guys who invented the LP vents and PLVs, some of the first home ventilators, and she’s very supportive of people on vents living independently at home.  And I have never met a doctor so knowledgeable about the ins-and-outs of daily ventilator use, or as flexible to make the patient comfortable, as her.  “Sure, I had one guy with a tidal volume of 2000 so he could fill his leak and talk easily,” she said.  Unfortunately, I’ve only met her once, my first week here.

The South campus had no vacancies, and, at the last minute, they discovered the alarm system in their “overflow rehab unit” was broken.  So I was admitted to the North campus, two miles from Dr. Dumbledore and the staff that trained under her.

The North campus is more of a general medical-surgical hospital, with over half of the units alloted for their nursing home, but there is also one ventilator unit (with roughly 10 vent patients, only two of which are non-comatose and talking) and adjacent to that, the rehab unit (A13) where I live in the closest room to the nurses’ station.  When lying on my side, I can look out my door and see the staff of both A13 and A14 at the nurses’ station.

I was put in a rehab unit, not because of my medical condition, which is typically considered by them to be beyond repair, but because of my goals (get as much rehabilitation as possible, and then transition to the community). All the other ventilator patients in the North campus are cared for by the Department of Medicine, not the Department of Rehabilitation.

But they’ve not done much rehabilitation with me here.  Coming in, I was quietly hoping they’d be able to improve my condition (at least slightly) with all the state-of-the-art ventilators, lasers and nano-tech they obviously must have in the wealthiest city in America, but … not so much.  I’ve not seen any nano-tech or lasers, but I have become acquainted with the next generation of ventilators.  The respiratory therapists don’t have to hunker down over clipboards and write down all the vent settings anymore, they just wave their Palm Pilot-looking handheld computers near the vent’s on-board infrared sensor, and the vent sends all the settings information to them.  In-line PEEP valves are now obsolete, as the vent’s computer now does that automatically.  But in the case of the portable vent (the LTV) that they have on my wheelchair, newer is not always better.  The turbine motor on the damn thing screams like a banshee trying to deliver the high volume (900+) I need, and the nurses actually mistake that high-pitched squeal for an alarm.

Why are they not aggressive with the rehab of Nick?  Because A13′s attending physician isn’t that familiar with what can be done for vent patients, and is naturally tentative and cautious.  “I wouldn’t want to hurt Nick.”  When problems have come up she’s learned a lot from the advice of other doctors (and me) and now has built up some Nick-expertise.  Also, she’s sort of adopted me, and her over-protective nature has probably saved me from being reflexively herded into the nursing home, so I wouldn’t want to ship out to another hospital, and very possibly land with a doctor who genuinely doesn’t care.

In truth, this is probably the best of the city-run hospitals.  The worst are like this.   Here, a patient would almost never get abused or neglected; the charge nurses or a doctor would eat the culprits for breakfast.  And, interestingly, the three shifts’ mild antagonism and urge to discredit each other for self-aggrandizement (“we’re the only ones that do anything!”) sort of acts like America’s three branches of government should, checks and balances against each other.   They can’t screw up too badly, or the other shifts will make hay of it.  “I have to bathe you now, or Tour Two will talk again.”

“It’s Not You, It’s Me”

Admittedly, I like most of the staff and have become a staff favorite.  Once, they brought me up to a nurse’s free luncheon and fed me goodies, despite a quizzical nursing director (“remember to take him back to the unit.”)  I am one of the more polite patients here and that goes a long way (a surprising amount of patients are bitter, and take out their frustrations over their newfound disabilities on the staff).  Also, I have to respect how hard most of the staff here work; on their feet for the entire shift (minus a one-hour break) juggling around 18 high-need patients.

The problem is that the institutional structure of the environment, the arbitrary and very strict policies they’re forced to follow, don’t jive with my free-spirited personality (to put it mildly).  It’s not you, it’s me.

What I hate the most is when they force my partner out of the hospital if she lingers after Professor Umbridge announces sweetly, “VISITING HOURS ARE NOW OOOOVER!!” over the Soviet loudspeaker that no one can ever turn off (it reminds me too much of this link I added to the Spring Hill College Wikipedia page).  And they use their security guards to enforce visiting hours if necessary.  More than once she’s either been escorted out by security, or just dodged the guards.  Why is a small girl in a powerchair such a threat?  It seems so unnecessary and inhumane to force us apart when we need to be around each other.

Forced separation from my other half is the part I hate most about this place, along with their strict safety policies.  Like whenever they have to re-insert my g-tube, they force me to undergo a painful stomach x-ray (or they won’t clear the nurses to continue tube feedings) just to protect against a one in a million chance freak tube accident that there’s no medical evidence to suggest will occur.  I’ve lost count of the unnecessary stuff I’ve undergone because “we can’t override policy.”  There are myriad examples of “practicing defensive medicine” (CYA) in every hospital nowadays, this one is not unique.

Home care, with one-on-one staff, is simply better than institutional care, where staff may not be available to even help you sip a drink at night, and you have to wait for them to finish with other patients, whose needs may be more critical than yours.  “YOUR ASS WILL BE WASHED IN THE ORDER IT WAS RECEIVED.”

More importantly, it’s ME.  I’m just not suited to institutional living; I want to cross uncrossed boundaries and experience new things.  On one of my birthdays (my 20th?) we went to a Mobile Mysticks hockey game.  After the game concluded, I drove my chair out onto the ice (where other spectators were) without permission, speeding away from Mom, nurses, who all yelled for me to stop.  The chair had never been on ice before (though the knobby tires I had were well suited for it) and I just wanted to experience something different, be different, not be like anyone else    Once my family saw it was safe out there, my brother drove out too.

A nice cage is still a cage.
People will often yell “STOP!” before you demonstrate the ice is safe.  In my life, I hope to show many people.

Nick