Christopher

Texas Neuro Rehab, the facility we’re currently at, wants us out of here. Case manager Kate Miffitt called me in Alabama during my two-weeks at home, on the 8th of October, to tell me that, “I don’t have anything to tell you other than Christopher’s in-patient benefits will run out at the end of the month (October).” I told Kate that was the first I’d heard of the benefits running out at the end of the month and she said, “no, we talked about it, remember?” And I replied, “no, we talked about the need for a discharge plan but have never discussed my son’s benefits running out at the end of the month.” She reiterated that the benefits would run out at the end of the month according to United Healthcare. The director of Texas NeuroRehab, Dr. Boysen, called me in on the 18th of October to tell me that Chris was not going to get any better and that I had to face up to realities and that Chris needed to go to a nursing home. He also pointed out that he was, effective immediately, stopping all physical and occupational therapy in favor of “restorative care,” although they would continue to charge the same daily rate. He said they were going to teach the nurses how to do restorative therapy for Chris, Chris has received none to date. Isn’t it odd how Dr. Boysen has taken Christopher’s money at the rate of $1400 bucks a day for four months of in-patient care but when the money runs out, oops, “he’s not going to get any better and you need to go!” And we trust in our doctors and so-called “medical professionals” to guide us in the direction of what they call “efficacious outcomes,” outcomes that are supposed to maximize benefit to the patient, not the corporate income statement. I was called again by the case worker, Ms. Miffitt, on the 22nd of October where she informed me that United Healthcare had “retroactively” cut off Chris’s in-patient benefit effective the 16th of October. In other words, Dr. Boysen knew when he talked with me on the 18th of October that Chris’s benefits were cut off on the 16th of October! I didn’t know, but Texas Neuro knew. We have received very little help from Texas Neuro in locating an alternate facility for Chris since we received the news of his health benefit being terminated and Dr. Boysen, accompanied by his director of psychology, Dr. Mercer, cornered me on the the 16th of November, after having placed a discharge notice on the board of the 17th of November, to tell me that they were going to extend the discharge date by a week to the 24th but that if we didn’t move out of Texas Neuro by the 24th, he was going to call Child Protective Services and have me up on charges of abandonment! Health care at its best! Of course, Chris being 28 years old may play into that somewhat in terms of child abandonment charges, but, it’s Texas Neuro’s way of threatening the patient through family members. On top of looking after someone you love, you also, by way of our healthcare system, have the for-profit elements of nastiness to contend with in terms of those medical providing professionals entrusted to give us sound advice and guidance on healthcare affecting our loved ones. We are working toward moving to San Antonio as an interim strategy while we wait on state funding for continued rehab. San Antonio also has hyperbaric treatments available and we plan to take advantage of these while we wait for the next phase.

“The System” of health care in the United States is a corporate-driven architecture of “for profit” activities in support of American greed and the profit motive. Period. Contrary to what you may hear in the news these days, particularly now as health care reform, ObamaCare bashing, and media generated “they’re going to kill grandma” scares us into voting for all those politicians that are going to “fight for us against Washington.” Have a stroke in this country, regardless of your health insurance policy, and see how we Americans treat you. If you cannot contribute to the corporate profit-line, you’re going to be discarded after a token of remedial efforts to get you a bit of therapy. “We gave you three months to recover from that massive brain stem stroke and you’re still not moving?” “OK, you’re outta here. Time for the family to take you home.” “What’s that, you don’t have a family? No, problem, the taxpayer will pay for your nursing home care. Whaddaya mean the facility has many complaints against it for infections and poor patient care, abuse and neglect, it’s on our list of adequate facilities and that’s where you’re going! And oh, by the way, but only if you don’t make any more than $695 per month.”
Health care in America is generally good for acute care in terms of emergency services and family doctoring for those with insurance, albeit with caveats. United Healthcare, for example, didn’t pay for my son’s ambulance ride to the hospital because it was “out-of-network! As a nation, we should be providing not-for-profit health care services to all our inhabitants, particularly those with a Traumatic Brain Injury, stroke, or other illness that requires the advocacy and voice of others for your care and treatment. As we navigate our way into uncharted waters in getting Chris well, I find myself ashamed to be an American after learning how little we do for our most severely injured and for those most in need in this country. Our health care system is driven by corporate profit and that’s mistake number one. Our health care operating costs are higher than any other country in the world and we are ranked number 37 nationally, just ahead of Cuba, by the world health organization in caring for our people. Yes, it’s arguable and subjective, but should there be any doubt that we ought to be number one in everything given that we are God’s gift to the world (or so we think)? The strongest nation on the planet can’t look after its people better than Cuba does! We have to do better and everyone that reads this can be an advocate for change simply by sending a simple note to your representative telling them that we want a better, not-for-profit, health care system. Please don’t confuse not-for-profit with a government-run system. That’s not what I’m saying. We need health care for everyone living in this country, as a right and not a privelege. An insurance company should not be in the loop for determining your health care needs. My son’s in-patient benefits were terminated by United Healthcare because they determined he has not reached a level of functioning that would qualify him for anything but what they call restorative care and the policy provides no coverage beyond a 60-day in-patient rehab benefit. They terminated it 45 days after placing him into a rehab category, no explanation provided. Does your policy cover you or are you like most Americans and have no idea! Please advocate in your conversations with friends and neighbors for a comprehensive program of healthcare in this country. And please send a simple note to your representatives demanding a not-for-profit healthcare system in this country. We thank and love you all very much and appreciate your kind words and donations and hope you never find yourself in a situation that calls for the advocacy of some drone sitting behind a corporate facade of caring making health care decisions on your behalf! Decisions that could very well determine your quality of life for the rest of your life! Please keep Chris in your thoughts and be active in your own thoughts about ways in which to make this country great again. let’s start with healthcare.

Chris finally has his own custom wheelchair as of yesterday evening, after a long four months of wrangling with the hospital and their wheelchair vendor.

The insurance co-pay on this chair was $2,900.  Donations to the fund right now total about $2,100 (whoa!), so that means y’all – friends, family and the huge group of folks coming in from the XL forum – bought this chair for Chris.  Thank you.

For what it’s worth, it’s an Invacare Solara 3G tilt-in-space wheelchair.  The mechanism on the headrest for holding Chris’s head up is a HUGE improvement over the wheelchair we were using on-loan from the hospital.  Oh man, it’s a huge improvement.

Thanks again, y’all.

Forgot to mention:  my Mom snared a hairdresser that was visiting the hospital last week, and Chris received his first haircut since the accident!

It’s a nice haircut, Chris looks good.

I was down at the hospital two evenings after work last week (Tuesday & Thursday), and noticed Chris was much more alert than I’ve ever seen him before.  He was pretty reliably turning his head to follow folks around the room, and would turn his head and his gaze toward the source of sounds.

Chris has done these things intermittently in the past, but this was different somehow.

The hospital upped the dosage of the anti-spasticity drug, Dantrium, later in the week, which causes extreme drowsiness, so I didn’t really get to see any of this new awareness over the weekend.  Hopefully we can convince them to tone down the dosage of Dantrium again – I think the benefits of being awake far outweigh the extra stiffness in his limbs.

It’s been a while since I’ve done full (08:30-22:00) weekday duty at the hosptal… took some FMLA leave Monday / Tuesday (thanks to my department and the human resources folks on main campus).

The physical therapy folks very kindly showed me how to work the standing frame and the MOTOmed viva2.  Had about an hour of standing frame time Monday with a lot of neck exercises, and thirty minutes of the same today (Tuesday).  Thirty minutes both days on the MOTOmed stationary cycling machine, although I’m not sure it’s any better than pedaling Chris by hand on the “manual” apparatus (we did some of that on Sunday to various Rage Against The Machine tunes).   The therapists also have priority on the MOTOmed device, since official therapy was terminated for Chris last week.  One of the PT interns kicked us off this morning, for instance… so I took Chris outside instead!  I’d say he received plenty of sunshine.

We polished off most of the 10/16-10/22 edition of The Economist over the last four days and covered the latest Glenn Greenwald topics.  Also did the Nintendo emulator thing in front of Chris on the laptop (Super Contra, Jackal, Cobra Triangle), watched some recent episodes of The Simpsons. Ahhh, and we did the usual Saturday UT football thing (TV + 98.1 FM radio commentary) – disappointing to lose to Iowa State at home!

My Mom’s back in town and will be at the hospital all day tomorrow (Wednesday).

Looks like we’ll still be here this weekend, so that’s good (not to imply that we have any idea where we’d be going otherwise).

On the PT/OT front, my Dad has taken over doing it… he’s had Chris on the therapy bike a few times, and one of the techs helped get Chris up in a standing frame today. It sounds like it’s working out pretty well. I think Chris is getting more therapy from my Dad than he was from some of the therapists!

I just wanted to say thank you to the folks from the HD XL forum that are sending thoughts and prayers, especially on unusually stressful day at the hospital…  helps us keep our chins up.  A bunch of folks have donated to the recovery fund, too, it’s unbelievable!

Chris’s 2003 XL883, on a mid-March ride we did out into the Texas Hill Country (Ranch Road 3232).  This is also the bike Chris was riding in the accident: