Backstory, Part Six

Two days later, Elijah and I were in another ambulance with the pediatric acute care team, on our way to Hospital Two. Leaving was awkward, for me--I felt intensely uncomfortable around the nurses at Hospital One as soon as the announcement came through that we were leaving. And I was a little nervous because I was making the move "on my own." Dan was back to work, and I had to learn to negotiate the new hospital all by myself. After Elijah was settled and our stuff was put away around his bed, I went to the cafeteria to eat, and to call Dan and let him know all had gone well. I remember feeling intensely relieved to be there, and nervous and uncertain at the same time.

The nursing care took some adjusting to. It was good, but it felt brusque and hurried in comparison. We had less privacy at Elijah's bedside, we had to walk farther to wash the pump parts--everything was just different and different was stressful. On top of that, our new hospital was a teaching hospital, so there were more rounds with more doctors and interns. It was hard, sometimes, not to feel like a guinea pig.

It was more than made up for by the extra attention Elijah got from his new team of doctors. They assessed the situation and changed several things in Elijah's care which seemed to make a difference. He started desatting less frequently, and we were able to start holding him, again.

And then things started to go downhill, again. The nurse suctioned him so vigorously that she made him bleed (further compromising his already pathetic little airway). A student nurse ran part of a feeding into Elijah's lungs rather than his stomach. The night after the feeding-tube-in-the-lungs incident, he had a really rough time, with a whole series of bradychardic/desatting episodes. The great thing about it was that the nurses at Hospital Two notified the doctors when Elijah started having a rough time. The doctors showed up immediately and bumped him back to the most critical level of the NICU. They started him on antibiotics, and because we were so close to the surgery date, planned to automatically intubate the next time he had that much trouble.

He started losing weight, day after day, and as his weight dropped, his blood pressure rose, and rose. And they couldn't figure out why. By this time they had identified the dilated aortic root, but repeated echos and repeated kidney ultrasounds weren't really giving them any useful information. They finally got his weight stabilized, and then it started going up again, and they put him on blood pressure medication. His condition stabilized again.

At around this point in time, our stress level kicked up a few more notches with the addition of some very difficult things going on in our extended family. And as if that wasn't enough, Dan's supervisor at work suddenly decided that it was his goal in life to make Dan's life as miserable as he could, insulting him, talking negatively about him to other coworkers, penalizing him for things he couldn't control, and so on.

And then, the day before Elijah's surgery, as the various surgeons' interns were filing through with forms for us to discuss and sign, GI showed up, wanting to place a g-tube and do a fundoplication. They gave us less than twenty-four hours to gather information and make an informed decision on two pretty major surgical procedures--one of them permanent and irreversible. The inconsiderateness and/or arrogance behind that behavior still steams me, when I look back on it.

And so we came careening up to the night before Elijah's first surgery.