Eventful Stasis

We're working really hard to keep Jaisal unchanged. Our goal is to improve his respiratory function to wean him from the vent, but every time he takes strides forward something comes up and we end up back at square one after lots of intervention. The doctors are stumped to an extent and we're drained on every level imaginable.

We still think Jaisal's breathing issues are related to a fluid overload. The poor kid is swollen everywhere. However, the diuretic dose he received this morning resulted in a massive fluid discharge. Nearly half a liter over an hour. We think that although he was still fluid overloaded after this, the quick loss targeted his vascular system (basically made blood flow more difficult) and we had all kinds of issues with his heart rate and blood pressure. While trying to manage all that and get those vitals back into normal ranges, Jaisal woke up a bit and became really agitated. Unfortunately each time he breaks through the sedation like this, we are having a harder and harder time getting him sedated. The resulting agitation affects his breathing and makes us go back up on his vent settings, eliminating any progress we made over the course of the day towards weaning him.

The sedation thing is no small issue. He's on morphine and two sedative drips and when he gets agitated, he gets booster shots of the morphine and one sedative through his IVs. Despite all this, Jaisal continues to fight his vent. Tonight we had to use a muscle relaxant to get him calmed down, and then had to put him on a drip of a paralytic to ensure he would not awaken. We've basically equated keeping Jaisal sedated to someone trying to tranquilize a rhino or an elephant, except we're talking about our tiny 20 pound boy.

Our new plan for tomorrow is continue to reduce, as much as possible, the input of fluids and slow the amount of diuretic we're giving to Jaisal to help remove the fluid. We're hoping that he'll still be able to lose his fluid overload this way and his vitals won't go so haywire. We have no real idea if it'll work, but we're really hoping tomorrow is the day he turns a corner on this breathing stuff. I think once we do get this sorted out, Jaisal will start to improve rapidly because all of his other stats and labs look really good.

Please send your good thoughts, prayers, energy Jaisal's way. His body has really been through a lot and we really just want to see our little man awake and be able to hold him again.