What the?

Jaisal was Jaisal today. Completely awesome in unexpected ways. His vitals while on the bipap mask were lower (in a good way) and more stable than they've ever been since surgery. We also were allowed to give him some breaks off the mask today to test how he would do, and although he'd eventually tire, once again his vitals were really stable while off the mask. Little man is such a trooper.

Naturally, we are hesitantly excited about his strides, but are confused as to his extreme yo yo-ing with his respiratory status. Jaisal's white blood cell count was down considerably today, which is great. The doctor's, however, can't really make sense of what is going on with Jaisal. If Jaisal did have an infection, antibiotics shouldn't have such a dramatic effect, particularly on his labs, in less than 24 hours. If the first white blood cell count was a false positive, then what made Jaisal's breathing get so bad a couple days ago? Our plan is to proceed much more slowly than last time in "weaning" Jaisal from the bipap mask. That way if he backslides again, the fall should not be so dramatic.

We spent a little bit of time talking about going home in the abstract sense. If Jaisal is able to maintain a stable heart rate and breathing rate - even if they are slightly high - on room air and use the bipap mask during naps and overnight to avoid tiring himself out, the PICU doctors will discharge us. Kirk and I think going home on the bipap machine is a distinct and promising option for us to be able to go home in the not too distant future. We'll, of course, think of this as a potential plan and Jaisal will do everything in his power to make sure the plan works out differently.

Let's see, in other awesome Jaisal news today, Jaisal's liver labs continue to go down. His direct bili is .8 and his total is less than 2. I spent much of the evening marveling at how white the whites of his eyes are and how his skin glows. (Pictures later today or tomorrow, I promise.) You also can tell Jaisal has gained weight. His arms and legs are still skinny, but they're not frail looking anymore. Dr. S, the surgeon, even noticed that his legs have a little bit of fat on them! I can't wait until the doctors give me the go ahead to feed Jaisal at will. I am sure Jaisal will eat more than they are currently giving him through his NG tube and gain weight even quicker. During physical therapy, Jaisal crawled a bit. He's still protecting his surgical area, but we've learned a ton of different games and approaches to increase his motion and get him to start engaging his core. The last and most surprising development of today, Jaisal got himself to standing in his crib!! We've tried to prop him up a few times over the last few days and the weakness in Jaisal's legs was apparent. The fact that he got himself into a full upright stand today was completely mind blowing!

Gotta go - Jaisal has started pulling off the leads on his chest in his sleep. It results in lots of loud beeping from the machines that monitor his heart and respiratory rate. Jaisal seems to unconsciously maneuver his hands directly, and repeatedly, to the leads over the course of the night. It keeps us on our toes.