Thursday, April 14, 2016

Day +191

The past two afternoons the weather has been great, and Raul has enjoyed spending some time outside! Today we found a good spot where he could watch the road and he actually stayed awake the whole time and seemed to be watching all the vehicles. We also declared him to be the greeter for the hospital, as we were out front and he had lots of people saying hi to him!

The other day we did the bone scan, and (somewhat surprisingly) he had no signs of a bone infection in his body. This is good news, though also doesn't give us any more answers. Last night he had another chest x-ray and had some atelectasis on the right side, so we are trying to get him to lie with that side propped up. This morning he gave us a little scare when he threw up, swallowed it back down, and then de-sated to the mid-80s. We briefly turned his oxygen up and suctioned him, but he returned to his baseline pretty quickly.

Raul's soluble IL2 came back almost double what it was last week, so we have held his steroid wean. Dr. Tolar came on service today, and in talking to him it sounds like Raul most likely does not fit any one diagnosis exactly. Raul never likes to follow the norms., so I guess this shouldn't be surprising! He just seems to have his own special inflammatory condition. Dr. Tolar actually said that this is good though, as it opens us up to more treatment options than if it were just HLH or just TMA/etc.. They were looking into a few medications today to see if we could get them for Raul. He also agreed that the kidney biopsy was likely not worth it, as the treatment for that condition would likely be steroids, and he is already on steroids.

Dr. Tolar seemed optimistic that we could get Raul home in an acceptable condition and also that he may perk up a bit more as we continue to wean his sedation. We do not expect that he will be the same as he was before his cardiac arrest, but any improvement would be great! He has already gotten more alert this past week as we have weaned both the Ketamine and Fentanyl a bit. 

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