Continued Progress

Jaisal spent the whole day without any respiratory support. It was awesome. We got a mat for the floor of our room and Jaisal actually got to play. He even crawled a bit, until he got tangled up in the cords monitoring his vitals. Jaisal is still struggling to breathe a bit. His heart rate is pretty high as are his per minute respirations, but on exam his lungs sound clear and as if air is moving through them well. The main risk is that breathing tires him out to much and he backslides on his progress.

One key factor to increasing his stamina for breathing is improving his nutritional status. Since being admitted to the hospital for transplant, Jaisal has lost 1 kg, nearly 1/9th of his total weight. Some of that weight loss can be attributed to his scarred liver being removed and no longer having fluid in his belly, but the rest was the loss of what little fat and muscle he had. The kid is definitely gaunt right now. We were giving Jaisal 24-hour feeds through a naso-gastric (NG) tube, but last night he woke up wanting to drink from his bottle and has been eating like a fiend ever since. He seems to be ingesting close to the number of calories the nutritionist wants, so we're hoping to remove the NG tube and let Jaisal eat on his own. With his newly functioning liver, he should get a lot more of the fats and nutrients from the calorie-dense foods we're giving him and hopefully put on weight at a steady clip.

Speaking of Jaisal's liver, it's behaving pretty well. All his labs continue to trend downwards, except for one, his GGT.  GGT is an indicator of rejection, so the doctors are monitoring this number closely. They're not super concerned though since all his other labs are heading in the right direction and his immunosuppressant levels are still being tweaked to reach a therapeutic dose.

Overall Jaisal is doing really well and we are having a blast with him. Now only if he would sleep at night. Tonight he kept waking himself up and only seems to go back to sleep when I hold him like this.

Clearly, I need a bit of sleep.  I hope to get some in February.