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.
i think it would make a lot of sense to have all of the disney, hbo kids, nickelodeon, cartoon network and boomerang networks on cable in children's hospitals. can't they donate that service?

every night at 11:30 when i stay with henry, we watch tom & jerry cartoons on cartoon network for half an hour. i try to laugh out loud to see if i can get henry to chuckle along with me. sometimes it works. that's gold.
i haven't seen his counts from today so i don't know if henry has started to trend upward, but the latest counts continue to have me worried and depressed. i agree with laurie and (i think the doctors too) that the fact that he is an emotional wreck, depressed and hopeless, is definitely hampering the recovery. the wise doctors gave him a "pass" out of the hospital today and i really hope that buoys his spirits a bit. laurie and i are going to take him to toys 'r us where he is going to buy an R2D2 robot that he has wanted for some time. it responds to voice commands so i wonder if we can get him to wipe henry's butt and fetch him his urinal or drink of cold water. i know that attending to henry's needs is killing his caregivers. maybe a robot is just the thing.

unfortunately it feels like henry is hysterical most of the time he is awake. i just gave them the okay to give henry 25 mg of benadryl to put him to sleep. that isn't working. i just asked for morphine. so now he has morphine, codeine, benadryl and a bunch of other stuff coursing through his veins and he is still thrashing about complaining of pain and the inability to sleep. incredible. he is shaking and can only get words out staccato. i think we are close to getting him on selexa or lexapro or something to take the edge off. dr. cheng of child psych is handling that, but hem/onc hasn't really been consulted yet. i worry about drugs on the growing brain thing (watching too many ADHD and Ritalin stories on TV), but it isn't fair for him to suffer so much and be so sad all the time.

tomorrow marks a month that we've been here in Minnesota and safe to say we're all pretty burned out. the rest of us are paying a physical toll. i finally kicked my stomach bug last night, my knee is screwed up from wearing too big shoes (idiot) and it eerily creaks when i walk, laurie lost a crown which she is getting replaced this morning and jack isn't eating or sleeping well. the cool thing is that jack is going to the Minneapolis Jewish Day School. judaism is like a private club with reciprocity at clubs throughout the world.

though everyone in the family is itching to go home, i am worried about leaving too soon and having important issues unresolved. i really want those few good weeks of nutrition, no pain, stable counts, but laurie, understandably, doesn't believe that is going to happen any time soon and thinks henry will be better off at home. sometimes i think she is the champion of "quality" of life, while i stick crazily to this notion of "quantity" of life. but it really isn't that simple. i think that we often get to the point where we've had just too much of the hospital and all of the associated dehumanizing nonsense and get greedy for home. and we think that the more we're away the harder it is for henry to get better because his emotional well-being has such a strong connection to his physical recovery. but often we rush home only to turn back around a day or a week or a month later for the hospital. in this case, laurie may be right that Minnesota has done all of the critical diagnostic and clinical work to get his GI system running again and to treat his GVH, and now we can care for him at home and Georgetown. i really don't know what is the right course of action, but i normally defer to laurie because she is so damn wise.