When we send such babies home, though, I always cross my fingers, say my prayers, knock on wood and generally just hope like crazy that something doesn't get screwed up. It shouldn't be so hard to take care of an oxygen tank, nasal cannula, and apnea monitor. The companies make them pretty easy to handle, at least it seems that way to me. But the number of times something goes wrong is irritatingly high.
One of these moms called us about two days after discharge, complaining that she was running out of oxygen. When the home care company checked things out, they found that the oxygen flow was set on 2 liters per minute instead of one-quarter liter per minute, so it was running out 8 times faster than it should. I don't know what happened there; maybe mom got 0.25 and 2 mixed up. Maybe she didn't know that 0.25 equals one-quarter.
The other mom called us to say her son's meds had run out, and would we write a new prescription for them. I asked her if she had seen her pediatrician yet, since she has to make the transition to her outpatient doctors (although I did give her new prescriptions.) She told me that she had decided to switch pediatricians, so instead of keeping the appointment we made with her pediatrician one week after discharge, she instead made an appointment with the pediatric clinic at the university hospital. That wouldn't be a problem - except that the appointment was for six weeks after discharge, and this baby needed closer monitoring than that. At least she kept her appointment with the pulmonologist, who wrote in her letter to us that mom didn't even know how to turn the apnea monitor off.
I sigh just thinking of this. We take care of these kids for 3 or 4 months in the hospital, and then just hope their parents don't screw up. And if they do screw up, we'll probably get blamed for not providing enough education. All the education in the world, though, doesn't seem to be enough for some moms.
Every now and then one of these babies dies a sudden death at home, and then I just want to pound my head against the wall. Life is a crap shoot, and some babies have better odds than others.