Biopsy Day Updates

9:00pm update:

The biopsy results came back.

Showing no sign of rejection.

We're all surprised - the symptoms Job is experiencing seemed to match rejection so well. His Tacro dose was so low that the bias was immediately towards rejection and necessarily so, because treatment had to begin.

They stopped his intensive course of steroids (methylpred) but can of course restart it if it is determined later that this is rejection that just didn't show up on biopsy.

It's possible this is a false negative and so further monitoring is needed in order to determine what is going on in Job's body.

He'll get an echo in the morning and more labs and the focus will probably be on finding the right course of diuretics for him. We'll need to stay here for several days, probably not to treat rejection  but to figure out what we need to treat and how. I guess Job just likes to keep his team busy researching.

Job is back to himself after this morning's activities, engaged and interactive. 

He's not quite back to his pre-transplant self activity-wise, but this little hospital stint doesn't seem to be negatively affecting his attitude much (at least not yet). He spent most of his time out of his crib and had our full attention and a steady stream of new toys from Child Life, so he was pretty happy.

5:00pm update:

Job drank 38oz of thickened juice from 12-5pm today. And he's eating a lot of food as well.

He's drawn and played with blocks and animals and done puzzles and watched his favorite video multiple times. He's been mostly happy - some pain at the incision site for his biopsy at his right jugular vein.

12:00pm update:
Job is back to his room and recovering well from the procedure!

All signs point to rejection (increased pressures and decreased function and fluid overload) but pathology is on a rush order to get his samples processed as soon as possible to make the official declaration.

We're starting treatment as though he's in rejection though because he probably is. He'll be on high doses of IV meds and we'll get lots of labs. A discharge this weekend could be possible, I suppose, but we'll see how it all goes.

Theoretically he'll be happier this admit because he can eat and isn't on viral precautions but he is starting mega doses of steroids so maybe we'll just be back to raging.

8:30am update:
Job is already off in the cath lab!

Their first case was cancelled and Job fell asleep and stopped eating/drinking early so he was eligible to go! (So glad I didn't wake up to my alarm in the middle of the night to force feed him in the middle of the night as I had planned to do!)

Going early means less time NPO which means less time grumpy! We basically woke him up to give him his pre-op "bath" and then whisked him away.

He should be back in his room by 10 or 11am and, because this is probably just a biopsy (measuring right side pressures and taking tissue from the right ventricle) and not a cath (assessing his vasculature and measuring venous and arterial pressures) they will only go in through the neck which means he doesn't have to lay flat for 4 hours like he would if they needed groin access. That's so great! It has been so hard to lay still as needed the last few caths.