I guess it was kind of inevitable, that eventually one of my patients was going to pass away. I actually didn't expect it. Maybe I was naive, maybe I wasn't paying attention, or maybe I just had so much hope for the little kid.
The initial prognosis was already pretty bad. It was a twin-twin transfusion syndrome, and my kid was the donor that became a recipient after laser therapy gone awry. One twin was "donating" its blood into the other twin, and the laser therapy was supposed to stop the twin-twin transfusion from happening, but instead, the roles of the twins got switched. My twin is supposed to have the better prognosis overall, but had brain bleeds and heart failure post-delivery- common complications. The heart actually had gotten better, but the brain was slowly decaying. The bowel perforation didn't help either.
Things were actually quite stable. While there were no significant signs of impending doom, he had so much edema, it looked like he was a full term baby. But then you see his tiny little button nose, and realize how puffy he really is.
Each day, we were hoping the little guy would keep on peeing, wouldn't increase his heart rate too much, and keep his oxygen saturation high. It seemed like we were always playing this tag game with him: we would decrease his fluids, decrease his ventilator settings, and hope he tolerates it, but then the next day he would stop peeing or drop his saturations, and we would go back to square one.
Finally, one day, after being off for a day, I came back hoping things would still be stable. But he had significantly dropped his sats and urine output such that he had to be on a lot of supportive medications and got changed to an oscillator. When I checked on him, he still moved his little puffy hands, maybe even grasping my fingers. But before I knew it, there were already talks of redirecting his care.
I was hoping it wouldn't come to this. I couldn't help wondering if maybe he would've been in better shape if I had checked an albumin level and infused him earlier. Perhaps we should have checked his heart function earlier as well? But ultimately, I think in the the back of my mind, I knew his brain function would have never recovered.
It's puzzling how each person has a different way of dealing with the days before letting a loved one go. Some prefer spending each waking second with that person and treasuring every last bit of love, while others prefer to distance themselves early while they can, before more emotional attachment could form. My little guy's family chose the latter.
But no worries, the little guy was loved plenty the few minutes before he went to heaven. He was dressed in normal cloths as best as the nurses could manage and surrounded by nurses and other healthcare workers holding him, watching him, and capturing him forever in the form of photographs and little footprints. He even had his little toy puppy watching over him. And after all the ceremonial acts were done, he was given plenty of sedation, and taken off the ventilator. As the minutes ticked away, all we could do was watch him slowly turn bluer and bluer, while occasionally taking little gasps of air, until his heart stopped beating. I didn't know why I didn't feel any sorrow at that moment, but when I held his little body and touched his button nose, emotions rushed in. He had hardly lived on this earth, and he was gone. Just like that. But for me, it was like he was still my little baby whom I visited each morning to listen to his quick heart beats, coarse breath sounds, and just possibly, a gurgle in his stomach.
