Discharge...delayed?

Ugghhh, we can't catch a break. I know this is starting to sound like a broken record, but it's true! Once it was decided that we needed to go home on bipap, the thought was that we'd spend one night using our home machine in the PICU and hopefully be discharged the next. That plan did not work out since that machine as well as two others did not work for Jaisal.

The issue is that with Jaisal's partial diaphragm paralysis he cannot get enough volume of air in his lungs, particularly when he sleeps and he breathes slower and less deep. If the lungs do not stay inflated enough, he can have small pockets of collapse. To avoid this, the doctors want to have him on a bipap machine, until his accessory muscles get stronger to compensate for the paralyzed diaphragm or the diaphragm becomes unparalyzed. When Jaisal inhales, the bipap machine is programmed to provide enough compressed air to keep his airways open, and when he exhales, the machine is supposed to deliver lesser pressure so that he can empty his lungs with less effort. For some reason, each of the potential home machines is not syncing with Jaisal's breathing to switch to the lower pressure to allow Jaisal to empty his lungs. This results in him working harder than he should to breathe while sleeping, which is when we want to take away his work of breathing to allow him to make it through the rest of the day without breathing or oxygen support.

The doctors know that part of the problem is that Jaisal is breathing through his mouth because we are using the nose only mask. Typically this alone is not problem enough to prevent the machine from triggering the lower pressure, but in Jaisal's case it appears to be. Our newest PICU attending, who also is a pulmonologist in addition to being a critical care doctor, speculates that Jaisal may have narrow nasal passages. The only way to determine if that is an issue is a head CT, a path we are not going down unless absolutely necessary. It is surprisingly hard to avoid sedation and radiation when you're in the hospital, but we're doing our best.

One option we have is to use the full face mask that we were using in the hospital in the past, but they don't really like to send people home with that mask as there is a risk of aspiration or suffocation if there is a mechanical malfunction. Another option is to set a back-up exhalation rate on the machine to make it think that Jaisal will exhale a certain number of times in an hour. The problem is that if this these exhalations do not sync up with Jaisal's natural exhalations it could agitate him and disrupt his sleep, defeating the purpose of the mask helping Jaisal to get some quality recuperation time. A last option is to use Afrin or steroids to test the nasal constriction theory. That of course is a trial and error process that keeps us in the hospital longer and potentially adds medications to Jaisal's daily regime of 7-8 medicines a day administered in approximately 16 different doses over the course of the day. No options are ideal at this point.

While all this plays out we can't even get moved out of the PICU. No other floor in the hospital, including pulmonology, will play with bipap machine settings, so until we're "stable" we have to stay in the PICU, which is the same time we can be discharged. The real kick in the pants? Jaisal perfectly triggers the hospital bipap machine, but we can't rent that from anywhere.

Lastly, the doctor said that he's only seen a handful of cases in his career where a kid does not trigger the lower pressure settings of the bipap machine. Guess who is now part of that handful??? I'm getting really tired of being the extraordinary statistic when it comes to medical outcomes.