Jul
07

What to Expect.

On the 25th of June, Simone had her oxygen evaluation, a five-hour test designed to see whether she is ready to ditch the cannula and breathe regular old air like the rest of us. It isn’t the sort of thing you can study for, so I tried to compensate by doing some extra hand-wringing and tooth-gnashing prior to the event. Simone is on a tiny amount of O2 (1/16 of a liter), and the expectation had always been that she would be able to come off after her first evaluation, but I knew from experience that expecting the best only leads to trouble, so I was studiously preparing for the worst.

I had been instructed to bring diapers, wipes, bottles of milk, extra socks, an extra two-piece outfit, a blanket, and a Dani Sling (the sling that holds Simone upright on her angled crib mattress, prescribed for her reflux). The baby was to be free of any oils, lotions, or unguents, and I was told that she would need to have two feedings during the test, and to adjust her schedule accordingly. I was to arrive promptly at 9:15 a.m. This last part was the trickiest, as anyone who has attempted to go anywhere with a baby can attest, because the amount of time it takes to get ready and out of the house is wildly unpredictable, and adding in switching to the portable oxygen tank, the rearranging of feeding schedules, and the prohibition against putting a refluxy just-fed baby in a carseat…there was math involved, is all I am saying, but eventually, weighed down with an overflowing diaper bag, my laptop, the baby, and the oxygen—Madame Penguin clutched in my teeth—we made it down the three flights to the car and away we went.
The test is administered in a small windowless room in the special diagnostics laboratory, down the hall from the PICU. The room is on the third floor, but manages to give the impression of being located in a basement, possibly one reached by a series of dank and progressively more subterranean tunnels. The technicians hooked Simone up to a stunning variety of alarm and diagnostic machines. There were electrodes on her torso to measure heart rate and respiration, a pulse oximeter on her foot, two bands cinched around her chest and belly, and a sticky airflow detection strip under her nose and across her cheeks—all this in addition to a special cannula. She looked like someone’s science fair project, a more sophisticated potato-battery: with only a human baby and an assortment of cables I will provide electricity for all of metropolitan Fresno!

The test’s protocol called for her oxygen to be switched off. The pulmonologist had given the lab a series of parameters regarding how low Simone’s oxygen saturation could fall and for how long, and if she exceeded these parameters her oxygen would be turned back on and then slowly weaned as tolerated.
With the O2 off and wires plugged in, the technicians left the room to monitor the stream of audio and video transmitted via cameras mounted in the corners of the ceiling. The idea was to capture a typical day in the life of the subject, and so they told me to “go about my normal routine.” The room was dim, and it was just me, my science project baby, a crib, and one creaky wooden rocking chair. Oh, and the technicians: “If you need anything,” they said, “just wave at the camera.”

I don’t know what your “normal routine” with a baby looked like, but I am fairly certain that if it involved nothing but an infant, a windowless room, and a rocking chair, you are reading this post from the padded confines of a sanitarium. But then again, just imagine how much more agreeable a diaper blowout would be if you could signal the camera for help and wait for a fleet of technicians to swoop into your living room and whisk the soiled child from your arms.

Though it seemed as though it wouldn’t, the end of the test eventually arrived. And though her alarms rang several times, Simone had made it through without so much as a sniff of oxygen.
“I’m not supposed to say anything,” said the technician, “but she did really well.”
The report would be transcribed, after which the pulmonologist was to look it over and contact me with the results. Until then, Simone would remain on O2.
So I waited. And waited, for days and days, until last Thursday when a nurse called and said “Well, Dr. K thinks that Simone seems to be doing well on 1/16th of a liter, so he’d like to keep her on that amount and do another study in six to twelve weeks.”

The thing about trying not to get your hopes up is that it doesn’t always work. “That sounds sensible!” I said, with a brightness I didn’t feel, “Thank you for calling!” But before I hung up, I couldn’t stop myself from a plaintive question: “How bad was it? I’m just surprised, since she stayed off the O2 for the whole evaluation.”
“You mean on,” the nurse corrected me.
“No,” I said, “OFF.”

It turns out that the transcribed report had neglected to mention THAT ONE PERTINENT DETAIL, giving the impression that the technicians had been unable to transition Simone from the cannula and had thus done the entire test on her standard 1/16th of a liter.
“Oh,” said the nurse, once this had been made clear, “that changes everything.”

The doctor is re-examining the data and will call me with instructions, and while I wait I am imagining an alternate universe in which I hadn’t questioned the nurse and instead simply reported back to the pulmonologist in SIX TO TWELVE WEEKS. While I imagine this, I let out the occasional low growl.

I should hear something later today. I want to expect the worst, but am finding it difficult not to hope for something better.

By Alexa | Posted in Ceci N'est Pas Une Ecrivaine |