Where Jaisal Goes Rare Things Follow

After a biopsy you are required to stay for observation for 6 hours so that they can take blood and ensure you're not bleeding. All of Jaisal's blood draws and vitals indicated smooth sailing. We, of course, were staying beyond the 6-hour mark to wait for the biopsy results. As luck would have it around hour 7 Jaisal had a poopy diaper that was mixed with a bunch of blood.

Now we wait for an ultrasound to see what is going on. Odds are the radiologist nicked a bile duct while doing the biopsy causing the bleed. It likely isn't serious since Jaisal isn't experiencing pain, his blood pressures are holding steady and his hemoglobin isn't lower than normal. We won't know for sure until the ultrasound however. If the bleed is bad, it's going to require surgical intervention. If it isn't bad (which is what it is looking like) then hopefully he'll heal on his own.

Here's the fun part. My nemesis said that in her 9 years here, she's never had a biopsy patient have a bleed. Basically there are two possibilities. Jaisal just has all rare things happen to him or we had an inexperienced resident or fellow doing his biopsy. Either way, so not happy.

Beyond this bump, it turns out that Jaisal is experiencing really mild rejection. Really mild. Basically the same amount of rejection he was experiencing immediately after transplant and that we did not treat.  I'm torn as what to do.  The totally conventional approach would be to do 3 days of IV steroids, and then put him back on oral steroids for 6 months. They'd also raise his prograf trough and likely wouldn't wean him off his cellcept when they'd originally intended. All this equals a more immune suppressed kid. Big sigh.

The alternate approach would be just to reinstitute the oral steroids or increase his prograf level. Neither would guarantee kicking the rejection and if his labs stayed high, we'd be looking at another biopsy down the road.

I think we just want to try and get his LFTs to normal ranges and then see how Sir Oliver does, so we're going with the full blown approach. We are so hopeful that this will be what it takes to reset him and then we can just get back to our normal plan of reducing immune suppression over time and maybe one day weaning him off of the meds altogether.

This means that now after not really knowing this new hospital we will have explored 4 new floors of it this week. (I still think the hospital sucks, but I will admit that the new TVs, TV system and single rooms are nice, even though they don't make up for the total lack of character and the sterility of the new hospital.) Of course, through it all Jaisal is a ROCK STAR. He doesn't whine or complain. He's been laughing and smiling and playing. If only Kirk and I could be as happy as he is. We'll keep trying to learn.