Part Four (iii of iv): Home

March 1, 2014 § Leave a comment

Home Health

Presently, Lucy sees two home health visitors per week:  Her speech therapist and her physical therapist.  They work for an Austin-based company that specializes in pediatric in-home therapy for kiddos that have disabilities and special needs and we couldn’t be happier with them.

These are amazingly sweet, bright people who’ve worked hard through competitive grad-school programs to receive sought-after jobs, and who are great at what they do.   They’re motivated professionals that form and cultivate relationships, establish trust with children and parents alike, and they have an honest passion for serving children with disabilities.

I could go on and on about them.  They’ve been with us for over a year.  But this is our second experience with the world of home health providers, which we’ve learned is not one world.  The difference between our first experience and this one, in fact, couldn’t have been more night and day.

_____

At some point toward the tail end of our stay in the NICU, as we were being readied for discharge, we were asked if we wanted to be contacted by home health.  We said Sure.  At that point, blinded by the lights of home, we wouldn’t have said No to anything.  We didn’t ask a lot of questions and the nurse didn’t volunteer a lot of information.  It seemed pretty standard.  We guessed this was the natural course for people in our situation.  We had a special needs baby who had feeding problems and needed to keep gaining weight and who had a heart surgery on the horizon.

Since Lucy’s birth, our lives had been owned by the scale; by the capnographer; by the oxygen sensor; by the monitor.  We had none of these at home.  It would be a good thing for someone to come by every so often for weight checks, well checks and so forth, just so we knew nothing was sneaking past us.  The more eyes on her the better.  And to not have to drive to a hospital or office somewhere?   Once we affirmed that the visits would be covered entirely by medical insurance we gave them the go ahead to sign us on.

At my grouchiest, our first home health experience can be summarized this way:  After a few phone calls, an in-home assessment was conducted and Lucy became a patient of this provider.  Before we knew it our infant child had been “approved” for several visits per week ranging from weight checks to speech therapy. Upon learning how frequently our “guests” would be popping in (average visit duration 45min-1hr), I remember commenting to Missus that it was going to feel like being looked in on by CPS three times a week.  I was not far off.

Most of these appointments were inane maneuvers in going-through-the-motions.  Many times it seemed like the person was only there to operate the computer tablet that was obviously driving the session.  I felt positive that Lucy was too small, still too baby to benefit from anything that they could do and that our time was being wasted.  Then I’d tell myself that I was probably just being grumpy about it all and that I’d better just keep my mouth shut and let them do their jobs.  But it was hard.

Our house had become a revolving door to well-meaning strangers who would come and stand in our living room and tell us things that we already knew.  Things that any engaged, self-respecting, non-mouth-breathing parent already knew.  We were being seen by a spectrum of humanity ranging from well-schooled licensed therapists to people who seemed to have little education but could call themselves nurses.  We were literally told by one unkempt individual about the importance of “tummy time,” as if it were a radical new concept in infant physical development that we needed to be made aware of.

I winced at this and my eyes spun backward in my head while I began forming the notion that we had been farmed out by our hospital and fed to some system that preys on either the ignorant or the scared shitless or both and that, in the undertaking, Lucy had become a little money train for a vast medical conglomerate.  One that had now been given a carte blanch mandate with which they could prolifically bill our giant, faceless health insurance company.

What we did not know, and what would become oh-so clear by contrast in time, was that the home health provider we were referred to by the nurse at St. Elsewhere did not specialize in pediatric patients.  They were a large, general provider based in San Antonio that saw pediatric patients along with all their others, which we venture to guess were overwhelmingly geriatric.  The whole frustrating experience can be distilled down to a bad referral.  Thanks again, St. Elsewhere.

_____

 When we left town that summer, we were gone just long enough that Lucy’s provider had to discharge her from their care, per their protocol.  When we returned home and brought Lucy in to see her pediatrician for a weight check, we asked if he thought it was necessary to go through all of that again.

We talked about it some and finally he shrugged and said that there probably was no reason to, at least not until later.  A kind of huge validation came out of this conversation, though, when Roger, our pediatrician (who happens to be a relative) basically echoed my original, grumpy sentiment about the entire business, implying that she, Lucy, was probably still too small for any of that.  Why not let her get a little bigger and then resume — after she’s recovered from the surgery?  I mean — Physical therapy?  Speech therapy?  She was, after all, just a tiny baby.

I nodded my head, squinting a little, trying my best to appear at once cerebral and in full agreement that this course seemed to be the most logical, but in my head I was screaming, “I KNOW, RIGHT?!!

It was another reminder that it’s okay to trust your gut sometimes.

 

 

The Fear of Children

On a select few occasions in this interim between the NICU and the surgery, I would need to reach and grab my flopping fish of a heart out of the air and ram it back home, it having abruptly launched itself from my chest cavity and out through my throat.  Partly responsible for one of these episodes was a new problem we were working through that, for some reason, hadn’t manifested in the hospital setting.  That would be the puking.

It had become an unfortunate regular occurrence, plaguing us for the first handful of weeks:  At least once a day, Lucy’s newly ingested milk, sometimes fresh down her tube, would find its way back up through her esophagus and spill out down her neck and onto her onesie.  These episodes almost unfailingly coincided with her bowel movements, so we were baffled as to how to control this, and whether it could even be controlled.  We wondered if it was owed to a separate, gastrointestinal problem that would require surgery.  We wondered if she could gain consistent weight with so much milk regularly leaving her, those precious calories ending up in the washing machine.  More layers to the worry we were already wearing on our shoulders.

Sometimes, if it’d been a while since the last feeding, it was just a little bit of spittle that could be blotted away with a burp cloth (there is really no burping a tube fed baby, as no air accumulates in her tummy).  Other times the entire contents of her stomach would empty onto the front and back of her in one prolific low-pressure surge, accompanied however briefly by the wet sound of a burbling brook.  Sometimes there were bouts of gurgling and coughing that were over as quickly as they’d begun.  And still other times there were gagging fits that bordered on traumatic.

Missus began to wonder if the issue was caused by the thickness of Lucy’s high calorie formula, and time would prove her right — things slowly corrected themselves as the doctors backed her calorie mixture down incrementally.  But not before we were reminded that that awful fear you think lives only in the hearts of children and horror movie scream queens did, indeed, still live in our own.

_____

I am standing somewhere in our dining room trying to decide between sandwiches or sleep.  This is less than two weeks after bringing Lucy home.  Everything still feels a little new.  We are still getting our bearings and are also becoming slowly aware of this puking thing.  The girls are in school and the house is dead quiet when, from somewhere upstairs, the sound of Missus’ terror-stricken scream srikes my ears like an ice pick and shoots down my spine.  Her normally thin voice shrieks my name in a volume and register that I’ve not heard before  and the next moment I’m in our entryway vaulting over the hand rail, instantly halfway up the stairs.  (I’m not actually sure that I vaulted anything, but I have no recollection of starting at the bottom, or my feet making contact with the stairs underneath me for that matter.)

I’m readying myself for back blows, between the shoulder blades using ample force, Lucy’s face in the palm of my hand, her body longwise atop my forearm.  I’m thinking rescue breathing:  My mouth covering her mouth and nose, two small, one second puffs, looking for chest rise and fall.  That’s as far as I get.

I’m aware of my heart beating in time with speed metal and I’m using my hands to pivot me around and past doorways as I hurl myself into the nursery.  Missus is standing with her in her arms down in front of her, breathing fast, examining her.  Everything appears to be okay.  Lucy’s color is good, she’s not in distress.  Missus’ own distress is already in waning.  It was a particularly bad gagging fit, and yet practically over before I got there.  There is formula on Missus’s shirt and on the floor.  Lucy will need to be changed

“I’m sorry,” she breathed, achingly. “ She was just- I thought she was choking.  It seemed like she wasn’t breathing.  For forever.”

I put my arm around Missus and we share a long tired sigh.  We stand shoulder to shoulder like this for a while.  My hand gliding up and down her arm.  My head tilted over, resting on her head.  Admiring our brand new baby girl.  Our fine work.  Neither of us will resume anything resembling a resting heart rate for the remainder of the afternoon.  It’s all right.

_____

The next day.  I’m laying on our bed in the late afternoon, quite content in the no man’s land that separates us from full consciousness and the early stages of sleep.  But there will be no napping today.

Jarring me out of the land of Nod is an equally horrific and wall reverberating death cry, an encore of yesterday’s shriek without my name attached to it and undiluted by traveling distance.  Missus and Lucy are one room away, only ten feet and two thin sheets of drywall and paint separating me from the unthinkable.  Before my feet hit the floor I’m thinking heart failure.  Lay her on a flat surface, check for pulses.  911.  My hands encircling her tiny rib cage, both thumbs on her lower sternum.  Five compressions, an inch-and-a-half deep.  One rescue breath.  Repeat.  That’s as far as I get.

I sling myself around and through the door jamb and the first thing I see are the whites of Missus’ eyes as she sits frozen and bolted upright in her glider holding Lucy.  

“Sorry, she heaves.

“A roach.  It came out of the chair.  Right here.”

She cuts her eyes toward a crevasse down right beside her leg.  She was wearing shorts.

“And then it went over there.”  She nods toward the book shelf and then, seeing the confused panic on my face, offers all she can by way of apology. 

“ Sorry.  So, So, Sorry.”

We bought that chair used, off Craigslist.  Evidently it had been harboring foes — a checked white and mint green Trojan horse made by Pottery Barn.  I hated it as soon as we got it home and I still hate it.  It was uncomfortable.  It’s sitting in our garage right now.

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