Decisions, Decisions

Where to start - last night we went from the height of anticipation (the thought of Jaisal being extubated) to the depths of despair (no extubation and back on a paralytic).

We went into the night not expecting Jaisal to be extubated until Sunday. We talked through a plan with both the fellow and the attending and settled on simple goals of removing the paralytic from Jaisal's drug regimen and potentially reducing his vent settings to allow him to breathe on his own a tiny bit. We were all extremely nervous as to how Jaisal would react, since he's shown us time and time again that when he starts to get control of his faculties he fights against the tube and wants to roll onto his stomach. But we needed to test if Jaisal was ready to be extubated.

We stopped the paralytic around 7 pm and waited nervously. And nothing happened. Jaisal was chill. We reduced Jaisal's vent settings, and Jaisal was chill. We reduced his vent settings a bit further and still Jaisal was chill. Because Jaisal was going so well, the fellow decided that we could take a few more steps overnight towards extubation.

We removed Jaisal's blood pressure medication, since Jaisal's heart rate was a tiny bit low at this point. We also removed one of Jaisal's sedating medicines. Jaisal was moving a little at this point, and was tolerating the reduced vent settings. Basically he was showing us that he probably would be able to breathe on his own if the tube came out. All of a sudden it was looking like Jaisal would be extubated by the morning, and we were overjoyed.

The next step in the process was to wean Jaisal from his morphine (his pain medication) and his versed (his remaining sedative). He was on really high doses of both of these medicines so we had to get them lower before we could remove the vent to ensure his body was awake enough to breathe on its own. To give you a frame of reference, Jaisal was receiving the same continuous drip dose of both of these meds that the kid in the next room was receiving. Except the kid in the next room is a teenage boy who weighs 165 pounds - 8 times as much as Jaisal. It sounds kind of ridiculous, but I am kind of proud that my kid is such a fighter. I may not be so happy about his determination when we're having a parent child disciplinary standoff, but I love that he has so much spirit.

We reduced both of the morphne and versed by a very small amount. Jaisal showed no measurable discomfort. I decided the nurse could handle him and decided to go to sleep in his room right after he got a chest x-ray around 4:30 am. He was definitely a bit agitated after the x-ray, but the nurse had calmed him down well before when we'd had to retape his vent tubing, so I fell asleep unconcerned. When I woke up a little after 6, Jaisal was back on a paralytic and on higher vent settings.

I guess he never calmed down after the x-ray and his agitation was affecting his stats. Of course we weren't able to get him calm by upping his morphine and versed, since he doesn't respond to those and without a plan in place to handle his distress, the fellow's only option was to put him back on the second sedative and the paralytic. I was devastated. Not only that the progress we'd made overnight was all gone, but that somehow, despite being in the same room with Jaisal, I had slept through all of this.

I was angry, upset, and frustrated and basically turned into a blubbering idiot. The fellow came in to talk to me and explained that although the PICU is a 24-hour place, she didn't have enough hands to manage Jaisal at that hour fighting with his tube, particularly because we didn't have a plan in place for this turn of events. That statement was a serious blow. Several days ago we'd talked about how when we weaned Jaisal it was going to have to be a rapid wean and extubation because the morphine/versed combo were ineffective in keeping him calm. We just hadn't discussed the specifics last night because we didn't think we'd be that point overnight. Without a clear plan, I felt like everything fell apart.

I felt the PICU team wussed out in doing the right thing. More so, I was beyond irritated with myself. I am supposed to be Jaisal's advocate. It's the reason I rarely leave his side when he's in the hospital. I really like the doctors in the PICU, but Jaisal's care gets transitioned from person to person by shift, so Kirk and I are the ones with the true institutional knowledge of how he reacts. Kirk and I have been the ones educating each new doctor about how and when Jaisal will react to meds, because he does react atypically and we've seen trends over the last 5 days. And I slept through this critical period.

In my head, I know that because we didn't have a plan in place and were operating with a leaner night time staff, my advocacy to extubate Jaisal would have had little effect. In my heart, I feel like I failed Jaisal. I stepped away from the hospital to gather myself. Over the next two hours, I got myself whipped into a frenzy about what I was going to say during rounds to make sure Jaisal got extubated today. When the doctors rounded, the new PICU attending for the weekend was completely of the mindset that Jaisal is getting off the vent today. He seemed a bit skeptical that Jaisal got put back on the paralytic last night. Kirk and I were both relieved. This man was our new friend.

So Jaisal is off the paralytic again. Hopefully today is the day he gets off the vent. Here we go.