I may have jumped the gun. Alex had to go back on air support last night, but I’d already posted it as a milestone, a success. The nurse called me at about two in the morning to tell me, as I had asked her to do if they needed to put him back on support. He’d had an event. I don’t know for sure if it was related to him not being on support at the time, but usually when a baby has an event you want to help them by increasing their oxygen, which is hard to do if there is none attached.
He was having some trouble yesterday, before I left. His saturation was high, but he was working too hard overall, not necessarily to get his saturation up, I thought, but more likely just to get comfortable. I think he was having a growing day, and his arms and legs couldn’t find release from the tension. I tried swaddling him tightly, I tried letting him hang loose. I tried him on his back, his side. When I came back in the afternoon the nurse had turned him onto his stomach, and I watched him lie there and work hard to breathe, harder than he usually does. So what happened was, predictably, he got tired, and when he gets tired he goes apnic sometimes, stops breathing or breathes very shallowly, and his heart rate drops and this scares the shit out of anyone paying attention and thus, he’s back on support. I got a few good pictures though, yesterday, I think.
Today was worse. He was much more at ease, eventually, but today was another eye exam day, during which we discovered Alex has moved into stage two and beyond of retinopathy of prematurity, meaning it’s time to intervene. Intervening means shots into the eyeballs.
I don’t have it in me, still, to look all this up. I didn’t last week and I don’t now. I would anyway, energy be damned, but it wouldn’t make a difference anyway. I can’t look in through his pupils and see his retinae and diagnose, I can’t follow up on this myself as the days go by between checkups, I can’t ask Alex how his vision is coming along. How many fingers am I holding up? Learn to count, idiot! Also what fingers are! I can only continue to do what I’ve been doing, which is hold Alex when I can and tell him he’s going to be okay, even if I don’t know he’s going to be okay. It’s not a lie. It’s an optimistic interpretation of available evidence.
I took a photo of the form the eye doctor leaves by the bedside for the hospital to add to his file, so that Gretchen could send it along to her neonatologist friend to look at and give us advice, or just moral support, because neonatologists are not eye doctors, and we don’t really expect her to pretend to be one for us. At the bottom of the form is a checkbox for two possible diagnoses, it looks like, should retinopathy be discovered, and this week one of them is checked. Maybe previous weeks’ forms have had this box checked as well, but I just noticed it this week, and it says he is “at risk for progressive disease, guarded visual prognosis with real risk of blindness.”
A real risk? Not to hear the doctor tell it, and believe me, he’s not the most optimistic of fellas. He sugarcoats nothing, but he said this medicine works 95% of the time, and the procedure almost never results in infection or cataracts, in fact he’s never seen it go bad like that, not in his experience.
All the same, Alex will have a needle inserted into the backs of his eyes and have the medicine injected into the edges of his retinas, and I don’t know how exactly one goes about getting a needle into the back of the eye without going through the front, but maybe they do, somehow. (I will not look it up, it will not change anything if I do, nothing will change.) The medicine should get the blood vessels surrounding the retina to calm down and return to stage zero, and it should be effective for four to six weeks, during which time hopefully Alex’s eyeballs will undergo some more growth, and if the retinopathy acts up again in the future and if then it decides it will not be controlled by medicinal means, then perhaps laser surgery will be an option for him. Right now it’s not, because his retinas are too small, the disease too close to the fovea, the pit of the retina where the sharp vision is processed, what we would call a necessity, in order to perform the action we refer to as “seeing.” Lasering through that would be counterproductive.
Yes, I looked up “fovea.” Shut up.
Alex was upset after his eye exam, as per usual, and I held him until he calmed and I kept holding him as he slept and we rocked and we rocked and we rocked. I cried a little bit. The fear and the sadness hit me at what I would consider appropriate levels at about the same time, an hour or so after talking with the doctor. I felt sad and afraid in equal measures and they were not on the cusp, they were not peripheral, they were solidly inside my fovea and I could focus on them and receive them sharply. About an hour later, after changing his diaper and wiping his sweet face and seeing his big goofy eyes awake and undilated and studying me as I swabbed out his mouth, I felt better again, enough to call my wife and talk about what we should do next. All of which is to say, I think the new medicine is working just fine. Yay, Cymbalta.
I don’t like to end these Alex entries on a down-note, but I just don’t have anything super uplifting to add at the end, here. My photo of Alex without his nasal cannula generated a lot of positive responses, and here I am with an update that’s essentially a retraction, so how am I supposed to spin that positively? I got so many comments about prayers working and how God is good, and Jesus too, he got namedropped more than a couple times, seriously I feel like I’m being Christianity-trolled sometimes, and no I’m not into all that stuff but I still don’t like being the messenger in the crosshairs, bearing the unfortunate news that the prayers might not have worked just yet, that God is potentially not always unilaterally 100% strictly speaking quote-unquote good, and that Jesus might actually have been busy yesterday.
The best I can do is this: Walking to the hospital today, knowing already about the regression to the hi-flow ventilator but not the retinopathy, I hit the beep-bop crosswalk button, waited for my turn, and at the walk signal started to cross the street. A couple cars turning right were already at the light and beat me to the spot, turning in front of me. Then as I was approaching halfway across the multi-lane avenue, I saw another vehicle speeding toward the intersection from the hospital complex. I could see it was trying to make the light, and that it may not be factoring my presence into the equation. The Honda CRV indeed gunned the engine all the way up to and into the intersection, right as I was 3/4 of the way across, exactly bifurcating the car’s desired path. I paused. It was make or brake time, I realized. I had to either run forward to cross quickly or stop and jump backward, otherwise I would get hit. But as I paused to make that decision, I saw the driver see me, and as he decelerated rapidly I also saw him see me pause, and since I do generally wear a don’t-fuck-with-me look on my face as I cross the street, he thought I was pausing intentionally, perhaps to stare him down, but definitely to stay in his way and make my point, that I’m crossing, here.
I didn’t really mean anything by it, but the man took full offense. He was well over seventy, perhaps eighty, had his wife or geriatric life partner in the front seat next to him, but still screamed, eyes popping, loud enough for me to hear outside the well-insulated and soundproofed cabin of the Honda CRV, a very high quality vehicle, mind you, “FUCK YOU!!” In addition, he flung skyward, for my benefit, a rather severe, arthritic middle finger. And then he was by me, speeding away. Among his bumper stickers were two of the single-twist fundraising ribbons, both faded beyond color recognition. He was too far gone for me to read the others.
For a brief moment I wanted to fight this man. I wanted him to pull over so I could break his jaw for him. But that passed quickly. I was already not in a great mood, I didn’t need more aggravation, plus I couldn’t unsee the old woman in the passenger’s seat, who had paid neither me or her presumed husband no nevermind throughout the entire interaction. Her chin was resting on her left shoulder, her eyes down, maybe she was dicking around on her cell phone but just as likely she could’ve been the reason they’d been at the hospital, she could’ve been feeling like complete shit and her husband was trying to rapidly transport her to some other purveyor of healthcare that they could afford because this hospital didn’t take their insurance, possibly. She certainly looked like she felt like shit, all collapsed into herself like a bag of lethargic sand. Or maybe it was their own child they had just been to see, and the prognosis had not been good. Either way, before my foot reached sidewalk on the other side of the street, I had no malice within me, and hoped they reached wherever they were going safely, even if it was to church.
My baby will not go blind from this, but if he does, I will make sure he enjoys the hell out of life anyway. But he won’t, though.
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