Same ol, same ol

Jaisal didn't tolerate being at 4 liters, so back up to 6 we went. His liver labs also bumped up. Now we're assuming it's rejection. We have a liver biopsy scheduled for tomorrow. He'll have to be sedated for the biopsy, and any time you sedate a kid there is a chance they won't breathe well on their own. There is a real and significant risk that Jaisal will end up intubated after the biopsy, since he's already not breathing well.

Today was not a fun day. The thing is, I should have known it wouldn't be. Not to be all doom and gloom, but we just can't seem to catch a break. This morning during rounds, we talked about potential discharge midweek, and I had the bipap machine removed from our room. Naturally something had to happen to temper those thoughts (see the paragraph above).

This is all just getting old. We're worn out. The hospital is starting to feel like our lives. But we have lives and jobs and friends outside of here and right now it feels like we'll never get back to those things. I know that isn't true, but it's really hard to contemplate an alternate reality when there is no end in sight to the hospital. I think at this point I know more about what is going on in the nurses' lives than what my family and friends are doing.

And for all the great stories I know about transplanted kids that have nearly normal lives, I also know of the kids that have lots of bumps and complications. I'm really starting to fear that we're on that latter path. I know this time period really doesn't define much as to how Jaisal's journey will go, but the fears are there gnawing away at my psyche and becoming ever more of a presence in my thoughts. And in the truly self pitying moments, I quietly wonder if this is really my life.

And then I feel terrible for being so selfish. Because I'm just a bystander while going through all this. This is all happening to the little man and he continues to amaze us every single day. Our shy little, people averse kiddo has somehow blossomed into a social butterfly in the hospital. He engages the people that come into the room and is a smiling giggling machine. He even grabbed a nurse's butt yesterday!

Despite being confined to a small space Jaisal is learning new skills. He feeds himself with a spoon and fork. He's gained new dexterity with his toys, being able to turn knobs and slide switches.  His cognitive reception is vastly improved as well. He knows so many new words and is learning animals, colors, and numbers.

He's still not saying much these days. I ask him to say mama or mummy, and without fail the response will be dada or daddy. He's such a little stinker. Of course he'll squeak out a mum if he really wants to get my attention.

This evening Jaisal took a wagon ride around the floor. It took 3 people to orchestrate the ride, between the wagon, portable vitals monitor, high flow pole, and oxygen tank, but it was worth it to see him smile. He even tried to climb out of the wagon, so we eventually let him walk a bit (with our help).

So if through all of this crap little man can keep a cheery disposition and even persevere, I should be able to do the same. Today that felt easier said than done. Hopefully tomorrow, I'll be a bit more successful.