Saturday, October 08, 2005


Well, Robert needs more surgery. Last February, it became apparent that he had developed a mild scoliosis, which created some hip displacement. The hip displacement has gotten worse, and attempts to stabilize it with botox injections in his thighs, stretches, sleeping wedges, have gone nowhere. This was, of course, complicated by the fact that Children's Hospital in DC is so disorganized (at least its physical medicine part is), that the orthopedic surgeon was unable to get us the botox injections Robert needed from physical medicine until it was basically too late. He got them two weeks ago, and should have gotten them in mid-June. It was only after I blew up and complained to CNMC (Children's National Medical Center) Family Services that I got any action.

We've had some good experiences with CNMC, but not recently. More and more, it seems like a factory rather than a hospital that actually cares about sick and disabled children. I had heard from one of Robert's therapists that no funds were being put into physical medicine because the board & administrators of CNMC felt that disabled kids simply had chronic problems that no one could really do anything about--they had problems and they'd always have problems, so there's no real hurry to correct them.

CNMC also has no coordinated services for disabled kids, who have multiple problems that span across the spectrum of specialties, and the problems overlap across specialties. Robert sees a general pediatrician, a gastroenterologist for acid reflux disease, a neurologist, a neurosurgeon, physical/occupational/speech therapists, a physiatrist, a orthopedic surgeon. He's also seen a geneticist, and neurologists with different specializations. So you go to see one person, and then you go and see another person, and then you get different types of advice and treatment, and you have to wait for the doctors to communicate with each other, and then you have to go back and see everybody separately.

I think the main problem is that CNMC, despite its large size and many departments, does not specialize in disability. They are capable of treating one serious problem--like cancer or a brain tumor or severe trauma resulting from an accident--with expedience and knowledge. But the hospital cannot multitask.

I should trust my judgement about CNMC's inability to deal with disability based on a couple of minor, but telling things: 1) the waiting rooms are not set up to accommodate wheelchairs, and 2) the handicapped parking in the garage is always a mess. As for the waiting rooms, even the neurosurgery waiting area, which always has at least 1-2 wheelchair bound patients, is brand new, but filled with bench seats in such a way that there is no place to put a wheelchair without blocking an aisle or access to a door.

As for handicapped parking, the parking concession is subcontracted to a bunch of incompetents who place a premium on valet parking. The valet parkers actually park vehicles without handicapped placards in the handicapped parking area, as though those were free spaces on a Monopoly board. About 6 or 7 spaces have the width to accommodate a disability van with a ramp that comes out the side of the vehicle--these are now marked "handicapped--ramp vans only" after I complained to family services and suggested that. However, no one enforces this, so most of the time, you drive in and subcompact cars are parked in these spaces. If you have a ramp van, you have no where to unload your kid, because the sidewalk alongside the elevator is permanently taken by valet parked cars. Often, the curb cut that allows wheelchair bound persons access to the doors to the elevator is blocked.

The CNMC physical medicine department has only just this year gotten a wheelchair adapted scale. The examining tables in physical medicine do not have rails on them, so that you have to sit right next to your kid on the table so that they don't wriggle off and crush their skull.

If the hospital can't make the slightest effort to provide access to disabled children, other than wider doorways, elevators, and automated doors, can it really be that interested in the treatment of those with severe physical disabilities? I would venture to say that CNMC has no interest in real innovation in the treatment of and care for children with multiple disabilities.

I cannot subject my child to this kind of stuff anymore. We're looking in to Kennedy Krieger in Baltimore, which appears to specialize in disability--the problem is that it's in Baltimore, not in WDC.

Oh--and adaptation. People often apply the four or whatever stages of grief (death) to dealing with the loss of a child or caring for a disabled kid, the last one of which is 'acceptance.' I found a book that I've only skimmed, Nobody's Perfect: Living and Growing with Children Who Have Special Needs' by Nancy Miller, which refutes this. How can you 'accept' something so profound and life-altering? She calls the coping mechanism most families go through The 4 Stages of Adaptation: surviving, searching, settling in, and separating. And she suggests you cycle through each phase again as you hit new obstacles, problems, and crises. This seems to be about right for me.

We've gone through the survival phase so many times, it's taken us about 24 hours to cycle through it with the upcoming surgery. Now we're searching--trying to figure out how to successfully detach ourselves from CNMC. The problem is that the orthopedic surgeon we'd use is the best on the East Coast.

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