Sunday, May 1, 2016

Day +208

We got outside again this afternoon, which was really nice! Raul enjoyed watching the traffic and snoozing in the sun. He had a good weekend, after a rougher day Friday. After dialysis on Friday Raul had reflux/vomited into his mouth, and had trouble clearing it. He did not stop breathing, but did turn dusky/blue-ish for at least several minutes. We suctioned some out, and eventually it passed.

After that he got very agitated from everything going on, and as usual his breathing acted up. The doctors ended up calling both a staff assist and a rapid response to get more eyes on him. After increasing his oxygen, getting several sedatives, and all the extra people clearing out of the room, he was finally able to calm back down. There was talk about him going to the PICU, but thankfully he didn't have to. 

Later that evening he started having low blood pressures, and another high fever (104.5 Friday, 105 Saturday), so they added an antibiotic and put him on a blood pressure medication for several hours. Today they took that antibiotic back off as he has been doing better and they want to save it for when we really need it, as some of his bacteria is very resistant to antibiotics.

We have also stopped putting the topical antibiotic on the spot on his head that was biopsied, as it was fairly resistant to them anyway. This spot had several types of bacteria, and the pathologist found it to be a pressure ulcer. Last night we changed his mattress to an air mattress to try to help with pressure spots, and we are working on getting a better moldable pillow for his head. We will also be consulting an orthotist on possibilities to help keep his elbows from constantly pressing into the bed as those areas have worsened significantly.

Last week Raul tested positive for adenovirus, so began a medication for that. We will be switching it this week though, as we got approval to use a trial medication instead that has had very positive results. This medication will also be less hard on his organs than the one he started on.

Raul has now had seven doses of the Ruxolitinib for his inflammatory issues/possible HLH. His inflammatory markers will be checked tomorrow and should all be back by mid-week. Despite the higher fevers at the end of the week, this weekend he has had very few fevers! The team increased his dose from 5mg to 10mg on Friday. He has still managed not to have worsening platelet levels as a side effect, and has continued to get platelets once daily (and red cells every few days).

We had almost weaned off Raul's Fentanyl drip, but then they realized that the end of the wean had been a bit fast for how long he had been on it, so they increased the dose a little bit at the end of the week. He should be off it this coming week instead, which will mean no more continuous drips! His med. schedule is surprisingly uncomplicated for how complicated his issues are!

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