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.

We’ve mentioned a couple of times the book “My Baby Rides the Short Bus,” an anthology written by parents of kids with disabilities.  It’s been such a helpful and moving book to us that we’re organizing an event with one of the book’s editors, Jen Silverman.  So if you’re in or anywhere near Washington DC, please save the date!  December 4, 5-7 pm.

We’re excited about the opportunity the event will give us to hopefully gather lots of people who care about kids and disability and rights and justice.  Empower DC’s Child Care for All campaign is co-sponsoring the event, and a number of parents in that group have been organizing together for years to push the city for more public resources for special needs families.  Jen and possibly one other author from the book will read and share their experiences.  And who knows — we may even share something about what Lucas has taught us so far.

As if the blog weren’t material enough to choose from, there’s now even more written about Lucas.  Krista has been taking an online writing class for the past month, producing more stories and reflections about our lives as a family.  Here’s one of the short pieces Krista wrote — part of a longer sequence of snapshot stories from life in the hospital last year.

———–

October, 2009

There are three picnic benches and a small gazebo that sit mostly abandoned behind Children’s Hospital.  They are dwarfed and out of place sitting near the ambulance emergency entrance to the hospital and out of any hospital visitors’ or workers’ path into our out of the building.  Those tables became a resting and grounding place for Burke and I – a place I now remember with strange nostalgia when I think back on those three longest months of my life.

I remember sitting at the picnic table, calling friends.  I needed the grounding that would come from talking to people outside the hospital, friends who knew me and believed in me and who would love me no matter what came out of my mouth, even if nothing came out of my mouth.  Once, when Lucas was two months old, I called Alice and told her “I think I’m a better person already.”  She smiled on the other end of the phone and assured me that I was.  And that this moment of seeing something positive about my baby’s illness was not about denial, or just an illusion, but something real that I could also hold onto.

I told Alice that day about looking at the disabled children we saw in the hallways – the ones with extra tubes, with big wheels chairs, with braces and canes and walkers, with drool and drooping jaws and loud voices.  Burke and I saw these kids in the radiology waiting room we walked through every day on our way to the cafeteria and knew, without saying so, that we both wondered if Lucas would look like them one day.  And I was ashamed to realize that every time before now that I’d seen kids with obvious disabilities, especially cognitive disabilities, I distanced myself – quickly and without even stopping to notice – and assumed that it would never be me.

But now, as I walked past these kids and their awkwardness and their families, I not only knew that could be me one day, but I realized that despite all our hopes that Lucas would recover and be a “typical” kid, I would love Lucas no matter how different he looked.  And that, by extension, I loved these unknown kids and their families and wished I could protect them from people who thought like I had.  Like a religious convert who’s suddenly found Jesus, I was filled ideas of evangelism.  What if everybody could feel this?  What if we all could know that all people with all kinds of abilities and disabilities are as perfect and loveable as everyone else?

For better or for worse, those moments of lucidity and exuberance were short lived, and I had no energy for proselytizing.  By the time I got to the cafeteria I was usually distracted by the task of reheating our lunch in the dirty public microwave ovens and the other menial tasks of surviving each day.

The day after our last post about Lucas’s positive health reports and development, Krista and nurse Florence were at the hospital with Lucas for another routine visit. Getting off the elevator someone walked by, looked at Lucas in his chair, and let out a sad “awww.” Then, a moment later in the waiting room a man came up and said, “it must be really hard.” Throughout the long wait Krista and Florence could feel the eyes in the room on them and Lucas, each time they fired up the suction machine to clear the saliva out of his mouth or adjust the vent circuit in a way that led to that familiar, loud beeping.

It’s weird that the same day Lucas was getting compliments on his blog – about how good he looks and the excitement of all the progress he’s made – people at the hospital were going out of their way to remind us of his dramatic limitations.  We still haven’t figured out how to get him comfortable in his new stroller/wheelchair, so he often looks pretty out of it when we’re rolling around.  And just a glance at the tracheostomy, the vent tube, and the monitor wire connected to his toe can be jarring, even at a children’s hospital where difference is often on display.

But what you don’t capture in a 5 second snapshot of Lucas is everything.  We’re lucky – we get to spend lots of time with the little guy and see him at his best: when he’s cracking up because someone is about to raspberry his tummy, when he’s exploring a fascinating new toy and deliberating on how to best get it into his mouth, or when he’s splashing his legs around in his undersized bathtub.  With Lucas, patience is a virtue.  The more time you spend with him and allow him to do his thing, the more remarkable he becomes.

So it wasn’t surprising that it was Florence who immediately piped up when the man in the waiting room expressed his sympathy about Lucas’s condition.  “That’s ok,” she said, “actually, he’s doing great!”  The man eventually sat down and asked more questions about Lucas, spent some time talking with him as well as Krista and Florence, and it ended up being a very positive interaction (he was from El Salvador so he and Krista had a lot to talk about.)

In fact, even though it can be awkward at first, we usually appreciate it when people come up and ask  about Lucas, as opposed to the more common reaction of quickly averting eyes in an attempt to avoid the reality of a child connected to a ventilator.   We don’t hold the latter reaction against anyone – we’ve had it ourselves when confronted with people who have disabilities.  But as this curious man in the waiting room found out,  there are great rewards to having the courage and patience to get to know someone like Lucas.

Of course, a few short videos from the last month probably capture Lucas’s latest exploits as well as anything.  Check out the middle one in particular where he demonstrates his newly developed call-and-response clicking; the other clips, meanwhile, show the ways he’s been using his gradually increasing strength and range of motion to explore what’s around him.