PICU Day 7

Still updating from the PICU. Jojo is getting closer to his baseline. He has not taken any naps during the past two days, he watches TV and plays on the computer. His lungs are still junky, but he now responds better to the cough assist. The only thing is that he still does not want to be off his bipap and his O2 sat still dips to 94% or lower without the bipap. Yesterday his chest x-ray looked so much better, prompting the intensivist to suggest discharge for today. Well, Brady and I said no because we would like him to be off the bipap when we go home. So, it's pretty much up to us when Jojo will go home; that's how it's been during our past hospital stays. We are lucky that the intensivist has the knowledge about SMA and the care it entails, and that he trusts us with our judgment and decision when it comes to Jojo. We've been here a week, and therefore our intensivist has to take his days off and won't be back until Saturday. The physician who will cover for him is a pulmonologist; someone we saw once or twice before in the MDA Clinic about two years ago. We welcomed the opportunity to hear what he had to say about Jojo. So later this afternoon, the pulmo guy came and talked about sleep studies and so on and so forth, ending with the judgment that SMA kids will eventually have to move on to ventilators. That's fine and dandy, because we are interested in switching Jojo to a ventilator non-invasively. The guy has never heard of it. He's only familiar with ventilator via tracheostomy. So the whole thing sort of upset me. One, because why do we, as parents of the patient, have to be the one to educate the physicians on interventions that they are supposed to be the specialists of? Two, because I do not want to be reminded that my child has a progressive condition/disease with an inevitable result. Don't remind me of this, help me to do something about it.

Anyway, Jojo is having his sleep study right now. I'm curious to see what the results will be. Looking at his stats on the monitor tonight, he should be home. But we'll see how he does tomorrow. Maybe it's unreasonable to expect him to be off bipap during the day (as was his baseline) so soon after this illness. Brady and I both think that this is the worst illness he's ever had, even after the flu he had two years ago or the countless "pneumonia" or right upper lobe atelectasis he had in the past. We asked Jojo tonight if he was ready to go home and he said, "Not yet." As always, we'll follow his lead.