Late warning for Early Intervention

[NOTE: I keep promising to share the good updates. They are coming. But first, this just in…]

No matter how often we are subjected to the whims of health care administrators, it feels like a surprise every time. I understand it must be hard to plan for emergencies; not just your own, but the thousands of accidents that happen to people every day, sending them to hospitals. Doctors and nurses, radiologists, therapists and so on have the kind of “people skills” that we need to put Humpty Dumpty back together again. Hospital and insurance administrators, however, seem to have the people skills of Mike Tyson.

I think I understand. Maybe it stems from working as middlemen in a broken health care system. Sometimes it makes me want to bite someone’s ear off, too. Like this afternoon, when the social worker casually informed me that Kyle will be discharged tomorrow.

“That’s great news!” is probably what she expected me to say. Instead, my reaction probably came across like “WTF, tomorrow?”

Kyle’s amazing progress is great news, but I’m more concerned about his continuity of care right now. I’ve been expecting this kind of “treatment” (read: getting kicked to the curb with little warning) ever since some nurses started cooing things like, “Look how well you’re walking… You’ll be out of here tomorrow!” And so it happens.

I swear insurance agents have spies like dingbat CIA operatives, the ones who don’t know how to tell a reliable informant from someone who just likes the attention. Or those who already have a certain narrative in mind and then select only the facts that hold that desired story together.

“Don’t worry, everything will go smoothly,” is hard to believe when the person saying that cannot tell you who Kyle’s next case manager will be.

“All of that will be taken care of during tomorrow’s meeting.” You mean the one you haven’t told Jeff about yet?

“I’m about to call him now.” Great, thanks. Will Kyle have a room to stay in tomorrow while his father is in said meeting?

“Don’t worry, everything will be fine.” Except when she says that, I hear instead: “I have no actual information for you at this time.”

NYC has a program called Early Intervention. I’ve heard great things about their services, but the Orwellian in me is absolutely terrified by that name. Regardless, they are the ones we now will pin our hopes on for continuing the excellent therapy which has gotten Kyle this far.

Who wants to bet about how late Early Intervention will be to arrive on scene? (It’s a wager I hope to lose. I much prefer being pleasantly surprised.)

Two-fisted peach gobbler

Feeding Kyle can be quite a challenge. He’s very picky about hospital food. This is understandable. When we first arrived at Blythedale, some of his first meals were hard to stomach. Unfortunately (or fortunately for your appetite’s sake) I don’t have any photos, but I’m sure you can imagine:

A round lump of pureed broccoli, another round lump of instant mashed potatoes, a plastic tub of congealed brown gravy, and — the centerpiece — pureed salmon packed into the shape of a filet. It was beyond surreal. Each portion had uniform color, shape and surface consistency. It looked plastic, but it smelled like a broccoli and fish processing plant. Try not to gag.

Since then, Kyle has not been a fan of soft food. His meals arrive with a prescription that reads “Soft Mech.” It’s perfectly appropriate that the second word rhymes with retch. Yet some of them are just fine. I’ve enjoyed delicious vegetarian lasagna, a decent omelet, french toast and sausage. Even the pureed sweet potatoes are tasty if you ignore the “Soft Mech” instructions. Mixed vegetable medleys are indeed mixed (in a blender) and passable. But Kyle will have none of any of it.

Fortunately, there is fruit, through rarely of the basic, fresh variety. Instead, it’s little cups of cut fruit packed in syrup or, less often, juice. (Does anyone else find this strange?)

A week or so ago, we were blessed with real blueberries at breakfast. Kyle ate all of his and then all of mine. Sweet! Abby, the feeding therapist, was so delighted that she tracked down more and asked me to attempt a repeat performance. No dice, but I got photographic proof. (Abby shares my fresh fruit frustration; apparently, the cafeteria here considers it a “garnish.”)

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This week, orange-colored fruit was a hit. We both got small bowls of syrupy peaches with dinner. Partly as force of habit (Nana is diabetic, so I’m accustomed to fruit being sweet enough on its own) and partly in hopes of not fouling Kyle’s brace, I rinsed and drained the peaches and put them in another bowl. Yet again, Kyle gobbled up both of our portions, peered into the bowl and then at me, hoping for more.

Today it was grilled cheese and mandarin oranges that tickled Kyle’s fancy. I’ve found cutting his food into strips that he can hold works better than big chunks or the dreaded mush. As I was preparing to cut the grilled cheese, he just lunged for a half so I let him go for it. He gnawed his way through the equivalent of a quarter sandwich, alternating bites from each piece. There were only eight little mandarin wedges, and he downed them in no time. I wish there were eighteen!

Blue Highways of Blythedale

Jeff and Choi are both artists and it often shows. They see the world differently and act accordingly. Here, Jeff continues the transformation (started by Choi) of a blank canvas of blue foam tiles into a friendly neighborhood. I think William Least-Heat Moon would approve. Kyle certainly does.

Scheduling and medical technicians, real pains in the neck

Jeff and Choi drove up with Teo to Blythedale Children’s Hospital on Tuesday, 26 June, where I’d been staying with Kyle since Friday night. Wednesday was supposed to be Kyle’s MRI and neurology checkup, a very important one from which we hoped to get a date for removing the Minerva brace that is causing pressure wounds on his scalp and otherwise hampering his various therapies.

The Minerva brace was ordered to protect Kyle’s spine by stabilizing his vertebrae, which sustained hairline fractures in his crash-landing on 18 May. It was installed several weeks ago by a guy named Harry, who treated it (and Kyle) like a piece of office equipment. He told the nurses that it would require frequent adjustment, but only came once himself (after much pestering) to provide some assistance in this task.

Choi and Kyle, adapting to his new Minerva brace.

Nurses were intimidated by it because of the delicacy of an 18-month-old just out of brain surgery juxtaposed by clunky chunks of plastic and metal secured with complicated velcro straps.

As with police and Tasers, I think Harry should have been compelled to wear a Minerva brace for a few weeks before applying it to others. The one time I met him, it took all of my willpower not to kick him in the balls as he explained that nobody was available to come back for several days because he’d be on vacation. A medical professional Harry is not, but I digress.

On 26 June, there was a miscommunication between the various doctors and facilities involved in Kyle’s neurology checkup back at Cohen Children’s Medical Center. Jeff called and asked me to make sure the nurse practitioner at Blythedale had spoken with Kyle’s neurosurgeon. Apparently, each one had a different schedule planned for 27 June.

When I reached the nurse practitioner (by way of another nurse attending to Kyle and other patients in our “pod”) we were told that the MRI technicians (at yet another facility) just decided they didn’t want to do it. Nevermind that Choi had taken Wednesday off (no small feat) to be there and we got less than 24 hours’ notice—which might have been none if we didn’t take the initiative to call, ourselves!

If doctors like to play gods, sometimes I believe their office assistants aspire to be demons. Or maybe we’ve just been dealing with fools. Either way, their lack of professional courtesy in cases like this has been terribly frustrating. And I still want to kick Harry’s ass.

Content with being alive

Just before he opened his eyes, I made my peace with thoughts of Kyle being blind. I would be sad if the spark in his eyes was forever dimmed, but “Nana” (my mom) cheered me up when she said we should consider the possibility of Kyle growing up with a service dog.

That long moment of acceptance is forever burned in my memory. I pondered it on a long walk from Sunnyside, wandering without a destination down Greenpoint Avenue, thinking about life and arriving at a beautiful old cemetery on a hill with a view of Manhattan. It was a bright, blue-sky day. I felt the warm sun on my neck and quietly strolled among the graves and tall grass. Many dated back to the 17th century, and more than a few listed brief life-spans of less than two years.

View of Manhattan from Calvary Cemetery

Two years is too young for children to make permanent memories of their own, yet old enough for language, and certainly old enough for families to remember and miss them so dearly. At least one child in Cohen’s pediatric ICU died while Kyle was there. It could easily have been him. To say the family was devastated is infinitely understated. It could have been us.

I thought about these things in contrast to what it would be like for Kyle to grow up with a really well-behaved dog: a dependable, four-legged friend who would literally be always by his side. These musings warmed my heart and I have to admit being excited by the possibility. He would experience life so differently than most, and through him, so would we. I have always believed Kyle has something important to teach us. Perhaps we are now beginning to see what it is.

As I began my walk home, I noticed a van with government plates parked in a shady section of the cemetery with a spectacular view of the new Freedom Tower (site of the World Trade Center) rising in the distance. A dark figure was slumped at the wheel, holding his face in hand, elbow resting heavily on the open window. I felt his sadness intensely as I walked by. Later, I read that it was the tenth anniversary of the cessation of rescue and recovery efforts after September 11.

P.S. — Here’s a great NYT article about cemeteries in the city, including Calvary.