Day +141

Raul had a good night last night, and a busy day today. Last night they were able to wean his Epi fully off, wean his oxygen down to 30%, and wean the PEEP on his vent from 10 to 8. His x-ray this morning did show that his upper left lung had collapsed, likely because his breathing tube was initially misplaced a bit to the right side. This will improve over time. He also has some elevated liver enzymes related to his cardiac arrest and resuscitation, but they actually said they imagined they would be even higher.

This morning he had a head CT at about 8:30. It took 5 people to get him down there, and we briefly had to stop in the PICU hallway while they decided if his heart rate was too low (it ended up being fine). Switching him over to the CT machine and back to his bed was quite a project too! We have not heard the official radiology read of the results yet, but the regular doctors did not see any major bleeds on the CT. The CT does not tell us as much in terms of possible damage, so eventually he will likely get an MRI too once he is a bit more stable.

When we came back up he got pretty agitated about all the movement and activity, so needed some extra sedation and oxygen (but we have since weaned back down). We got him comfortable again, but then had to go down a few hours later to have his extra PICC line placed. This was done in the OR, so anesthesia transported him and gave him extra sedation before leaving the room. He was only gone about an hour, and they were able to find a good vein to use in his other arm. 

He had to get a second line placed as we had been using his dialysis cather since we came down but now he needed dialysis. We have gone to continuous dialysis for a few days as he is just so swollen and fragile enough that we could not pull the fluid all at once with regular dialysis.  Hopefully in a few days we will get down to his dry weight and then we can restart with our regular schedule. The continuous dialysis can only be done while he is sedated, so if for some reason he is ready to be extubated sooner they will switch back his dialysis sooner. With the continuous dialysis we now have to have two nurses in the room at all times. His regular nurse, along with a separate nurse to manage the dialysis machine.

In terms of his HLH they are seeing clinical signs that are promising. Today he got his last dose of Campath, but it could take a few weeks before we really know if it is working or not. His soluble IL2 from Monday was super high, about 27k, but they are still reassured by his clinical presentation. His labs next week will likely be off in relation to his cardiac arrest, so it may take longer for us to see a change.