Lucas Camilo

Despite some residual effects of his cold/eye infection, Lucas has been doing well this past week.  He’s been sitting up more in his chair – sometimes using his brace which keeps him very upright – and spending a little more time off the ventilator, including a span of nearly 5 hours on the Passy-Muir valve – a new record!

Unfortunately, the nursing company that oversees Lucas’s home care has not been doing so well lately, and they’ve decided to take it out on their clients (or so it seems).  This last week we were the victim of their latest ridiculous tirade and the story is worth relating, if only to help illustrate the challenges many parents of special needs face.

On Friday the nursing supervisors showed up at our home for her monthly “re-certification.”  From the beginning she had a chip on her shoulder and seemed determined to find something that would allow her to criticize us and assert her own power.  She found it quickly in the new ventilator that appeared by Lucas’s bedside.  You see, about three weeks ago the respiratory therapist from the medical supply company called us up and said that Lucas’s vent needed to be serviced, and that he’d come by with a replacement vent.  The LTV 1150 looks and works nearly the same as the LTV 950, and so it only took about 30 seconds for him to show us the one slight variation.  All the settings and displays were the same, and he hung out for an hour in our home to make sure it was working for Lucas before moving on.  We subsequently showed Victor and Florence, our home nurses, the one slight variation and everything went back to normal.  Until Friday.

The nursing supervisor was outraged that we hadn’t reported the vent change or gotten orders from the pulmonologist.  We explained that it was basically the same vent but she was determined to make everyone involved feel horrible.  And she wasn’t finished.  She observed Florence feeding Lucas one of our homemade blended formulas and really flipped her lid.  She demanded orders for the food, to which we responded that we hadn’t received them from the GI doctor, though we had agreed on a feeding plan weeks before after much haggling.  She called the GI specialist and exclaimed “they’re giving him some green concoction!”  Krista’s mom was on hand for the festivities and later observed, “she’s not very nice, is she?”  Krista, meanwhile, remained admirably calm throughout, and ultimately agreed to get the orders.  Ultimately, the supervisor effectively sent Florence home in the middle of her shift.  (Also, since it was Friday afternoon, we weren’t able to get the orders until Monday and therefore had to cancel Florence’s Sunday evening shift as well.)

The story continues with a series of phone calls on Monday and Tuesday, getting proper orders submitted and re-submitted, talking to different doctors, the respiratory therapist, Lucas’s case manager at Health Services for Children with Special Needs, etc.  Around midday Tuesday the nursing supervisor demanded that Victor, who had the next shift on Tuesday night, come into to the office immediately to get “trained” on the new vent (that’s the exact same as the old vent and which he’s been using for the last 2 weeks) as well as for “education” – ie disciplining – from the company.  This was the last straw.  Victor does a 12-hour overnight shift so being forced to drive an hour each way into the office in the middle of the day would mean that he’d show up to our home exhausted, without heaving slept.  Plus, even worse than the way we’ve been treated in all this is the treatment of the nurses.  So Krista called back ready to threaten us leaving the company (a somewhat complicated proposition or else we would have done it long ago).  Despite a lot of bluster, the supervisor ultimately conceded and said that Victor could come last night.  A small victory in a long, ongoing battle.

There are reasons that these companies have such strict practices, but everyone we’ve talked to agrees that our home nursing company crosses the line repeatedly.  But we’ve also heard that others out there aren’t much better.  And we like Victor and Florence a lot and don’t want to lose them.  There is a way they could switch to another company with us, and we’ll continue to pursue that possibility.    For now we just need to take a deep breath.

Each time something like this happens we’re struck by how poorly this system is set up to serve the needs of people with disabilities.  We’re also reminded how lucky we are to have each other, to have a supportive network of family and friends, and to have a level of financial stability that leaves us with options even if we’re cut off by the nursing company, or nearly lose our secondary health insurance (which happened a month ago).  This episode has been a pain and headache, but ultimately we’re relishing our small victory, having gotten what we want within just a few days.  We’re also aware that – as we wrote last year during our initial battle with the medical industrial complex around Lucas’s discharge – we are exercising privileges (of race and class, having the time, the know-how, the stamina, and the relationships with doctors) that not everyone brings to these fights.   And even still, Lucas gets screwed sometimes by this messed up health care system!  But we’re trying to figure out ways to make sure our battles are not just for Lucas’s sake but ultimately benefit as many kids and people with disabilities as possible.

Speaking of which… we’re excited about the momentum building toward the “My Baby Rides the Short Bus” event on December 4.