Day 37 update Los had a challenging Sunday morning and early afternoon. He ‘stormed’ a lot and the meds seemed to have little, if any effect on him. Once he was laid flat, his storming subsided and he began to rest. Once resting , the nurses gave him additional meds which kept him asleep for several hours. Once he awoke, Los became active and deliberately tried repeatedly to remove his ‘belly band’ wrap, grab ice packs and sheets. Later in the evening, Los repeated the same activities. He would go, rest and try again as we spoke to him. [...]

AM update from the Bentley family: Most of yesterday was very hard for Charles with Neuro storming and high temperatures. That came down later in the afternoon after a lot of hard work by the staff using different methods and medications. Late afternoon and through the night was relatively calm apart from one episode of spiking fever. This morning his temperature is normal, and he is calm. Doctors have ordered lab work on a few areas to see what the high fevers might be indicating. We should get that back later today. Charlos is still not awake, but his [...]

The morning update from Charles: Los had a stormy night (neuro-storming) with a considerably high fever, but as of this morning he’s been resting well for the past three hours and his temp is getting back to near normal. Los’ nurse today is very good and engaging; when she asked me what I thought the best plan for today would be; I told her, “ Not much, just to wake him up & get him out of bed” She liked that🤠 She did say she will try to work/move his legs and arms, maybe try the pedal machine later [...]

Update from the Charles Bentley (Los’s dad): So far, today has been somewhat of a ‘plateau’ day. Los had a challenging night. He was storming early this morning and had an elevated temperature. The temp went down to normal for a while but is now spiking (12:30pm). During the night, Los was placed back in the ventilator but he is now breathing over the ventilator. Our RT, Cheryle, said he may be moved to CPAP mode later today if his storming and temperature regulates. As he has laid here for the past 34 days, our family would like you [...]

CPAP on for 25hrs!!    Temp overnight stayed below 100.   He went slightly over 100 for a bit this morning but already settling back down to 99.   Good progress there with his temp not spiking too high the last two days. RT spoke with doctor about getting him on the Airvo high-flow oxygen support (progress and the next step to get Los off the ventilator — and which will open up some more ideal next step / specialty care facility options).   Doctor approved AirVo and thinks it is a good idea to try that out today, after seeing Los’s strong performance on [...]