Day +155

No intussusception on ultrasound today, removing his GJ tube was successful! We didn't start feeds today, but did start giving meds. through his g tube as he has some that do not have IV versions. We had been trying a dissolvable tablet of one, but his mouth is too dry and they were not actually dissolving.

Last night was another really hard night. He would sleep for 15-30 minutes at a time maximum, and then wake up agitated. It seemed to be more delirium than pain. We played around with his meds., and then he finally really fell asleep in the morning. We did try to get him up on an off during the day though as we don't want him to reverse his days and nights. 

Now that we can give g-tube meds. again, we seem to be back in a better place, and hopefully tonight will be better! He ended up being a little overly sedated during the day today and had some periods of low heart rates, so they did wean back down a little and we are going to try all non-medication things we can for his agitation tonight too.

Raul's weight was stable and we were able to skip dialysis today. He will have a dialysis run tomorrow, and if his blood pressure doesn't drop too much he will hopefully be able to go back to the BMT floor. They also were hoping for him to have at least one good night and have his medication regimen worked out before he goes back up.

The other good news from today was that his HLH markers are still improved! This makes two or three weeks in a row now, so it seems promising. We are going to start weaning his steroids, and after that go back to weaning his CSA. For now we are going to keep his CSA level lower, which will hopefully make his kidneys happy!