Wednesday, December 04, 2002

henry's outing sucked. he was miserable and couldn't get comfortable. we got the R2D2 and high-tailed it back to the hospital. he was moaning and whining the whole way. probably did not have the desired therapeutic effect, but it did show him he can get out of here. i just bought some batteries and will put everything together tonight. where's the joy?

laurie had an excellent discussion today with dr. van burik, henry's infectious disease doctor. she is very engaged in henry's case. when we first got here henry named a baby fish "chilly" that is in the aquarium in her office. dr. van burik feels that the the pain is most likely still a result of the pancreatitis. dr. van burik also is a strong advocate of allowing henry to go back to school as long as we take good infection control precautions. she smartly wants to reconvene the panel of all of henry's specialists, GI, Hem/Onc, ID (and i should recommend they pull in psych) next week to discuss the case. this group met once right after we got here and did all of the diagnostic testing. henry's pain is still so intense that we are asking that they look at pain management alternatives. i like the idea of oxycontin. that is what my mom was on up to her death. i continue to get freaked out how much henry's face and body remind me of my mom in her last days. when he grimaces in pain, i swear i can see her face in him. as long as there are drugs that can do the job, there is absolutely no reason for henry to suffer. if he sleeps through the next couple of days while his body repairs itself so be it. i am asking the resident that is on tonight to try and figure out if we can give him something different. god, i feel so bad for him. he is so uncomfortable. he is moaning and can hardly talk. he is so tough. too tough. tougher than the rest.

wow, henry just asked for some apple juice. he hasn't had anything to drink but water for days (weeks?). this is promising.

laurie's mom came, like the calvary, and hopefully her help will relieve some of the stress we're feeling. laurie, joe and her mom went to the bruce springsteen photograph exhibit at the university's frederick weisman art gallery today and said it was phenomenal. we talked to henry about him going with me on another "pass" out of the hospital. there may be a way to wheelchair it there in the tunnels that connect all of the buildings here.

i'm not looking forward to tonight. how about a hannukah miracle.