Day 375

Yesterday was such a solidly restorative day. I woke up feeling accomplished, laundry done, lunches packed, broth made, pill box filled. I decided it was time to go to back the office, if only for a few hours.┬áIt felt so good to be so singularly focused on work again, in a way that I’m unable… Continue Reading Day 375

Day 284

Benji’s little wet cough persisted in the night. He complied with my requests to inhale deeply and get his coughs out, and by the morning his chest sounded completely clear, according to his nurses’ stethoscopes. It was another night with little sleep; Benji had the cough, a fever that required Tylenol, and twice, he woke… Continue Reading Day 284

Day 283

“Mucosal desquamation.” That’s the name for what is happening inside Benjamin’s body due to Methotrexate-induced Stevens Johnson Syndrome. His lips, mouth, tongue, throat and belly are all sloughing internally and he is working hard to rid his body of its former lining. It’s making him very uncomfortable, but we are using his outer skin as… Continue Reading Day 283

Day 282

This roller coaster hasn’t come to a halt just yet. My intentions are being refocused tonight. I cannot grow complacent. It isn’t enough to just wait to be discharged. We have to build Benjamin’s body back slowly, safely, and most importantly, without infection. When the night nurse came to get Benji’s weight last night, it… Continue Reading Day 282

Day 281

We had a very sleepy morning here on the seventh floor. We both slept well last night but woke up frequently. Our night nurse was less experienced than her colleagues, and Benji’s morning blood draw took longer than usual. By the time we woke up for the day and completed Benji’s skin, mouth, and eye… Continue Reading Day 281

Day 280

Benji and I slept well. He woke up often but went back to sleep easily once I’d refreshed his water and put a new cold compress on his chest. He walked to the couch very shortly after we woke up for the day. It was a great start. After Benji was back in bed, we… Continue Reading Day 280