henry is laying there like one big bloated catatonic boy. we talk to him all of the time like he can hear us. it is incredibly painful to do this. we talk in that loud voice one uses when they talk long distance on a cell phone, like it's going to make any difference. putting lotion on his body is a treat. we keep him all lubed up and moving from side to side. i hope that touch really does heal. it is sad that you cannot hold or hug him with all of the tubes and wires that have sprouted out of his body.

one thing that has been really bugging me the past 72 hours is that i cannot remember henry from any time before 7 am on friday morning. it is so strange not to be able to remember the past 7 years at all. i cannot bring into focus any images of henry playing, singing, fighting with jack, swimming, eating, cuddling, reading, hitting a baseball, kicking a soccer ball, watching movies, dancing anything. i have stayed home and taken care of him the past two years and my memory is blank. it is like how my memory of my mom is frozen on the day she died. to correct this i am going to watch a copy of the nightline dvd that we brought with us. henry was featured on it earlier this year and they captured a lot of good footage of henry being henry. i cannot wait. i have a feeling this will make me cry a lot. i keep having this headache (so does laurie) that is a result of not crying but feeling like i have to cry. when you weep a lot you get a headache. i wonder what is behind that phenomenon. why does the body punish you for crying. everyone always says, "go ahead and cry."

the renal folks just came in and let me know that they want to start peritoneal dialysis sooner rather than later. peritoneal dialysis uses the lining of the abdomen to filter blood. a cleansing solution (dialysate) is introduced into the abdomen via a catheter. a surgeon will place the catheter in henry's abdomen and the procedure will either be up here in the room or down in the OR. there is always concerns about bleeding with any invasive procedure with henry. his platelets are very low, but he is receiving a lot of transfusions. we are waiting for a surgeon to let us know his availability, but it looks like it will happen tomorrow. they describe this dialysis as more "gentle" than the kind where the blood leaves the body and is cleansed by machine, hemodialysis. henry's blood pressure is too questionable to go the route of hemodialysis. the way this works is that fluid, wastes, and chemicals pass from tiny blood vessels in the peritoneal membrane into the dialysate. after several hours, the dialysate is drained from the abdomen and replaced with new solution. we're now learning all about the kidneys. fun.

what is disturbing is that all of this has no impact on the kidneys' recovery. that will happen organically, kinda like the first breathe from a baby. they told me that the small size of henry's kidneys and the trauma they've endured in the past (from toxic meds) will lengthen the recovery period. it could take as long as 4 weeks for them to start to work on their own. what the dialysis will do is clean henry's blood and take away a lot of the excess fluid that has caused him to blimp up over the past 3 days.

laurie is back at the ronald mcdonald house with her mom, her aunt and joe and jack. i bought her an aero bed because i cannot bear to see her physically uncomfortable in addition to the emotional anguish.

henry is being brought out of his deep stupor and he just squeezed his eyes shut a little tighter when i asked him too. yeahhhhhh! i asked him if he wanted to see laurie and his eyelid flickered. i called her and told her to get back here. he hasn't responded to anything since.

smile, smile, smile

every time i think of you i smile for a while
that's the one thing you always do
you always smile, smile, smile

acting out stories and hugging your friends
i smile for a while
you know what i'll do when i see you again
i'm gonna smile, smile, smile

like ripples in a pond and runners who pass the baton
good feelings will go on for mile after mile after mile
and your big heart circles the world every time that you smile

doing those voices and telling your jokes
i smile for a while
your crazy hairdos and thriftshop coats
they make me smile, smile, smile

every time you break into a broadway song
i smile for a while
everyone around you starts singing along
they smile, smile, smile

like ripples in a pond and runners who pass the baton
good feelings will go on for mile after mile after mile
and your big heart circles the world every time that you smile

o' you know i love you and i am glad you're my friend
i smile for a while
you know what i'll do when i see you again
i'm gonna smile, smile, smile
smile, smile, smile

dan zanes and friends
night time
festival five records
20002

[BigBody]

Henry once again cheats death. and again it is laurie who has to save his life -- in a hospital. This morning at 7 am, Laurie called me at the Ronald McDonald house and asked that I rush to the hospital to be with her and Henry. When I got here, Henry was as you see him here.



Last night, Laurie, Jack, Joe and I went to a Hannukah party and performance by Jack's school at a synagogue northwest of the city. It was fun and we actually saw some people there we know. Jack was awesome and it was nice to be altogether as a family, albeit minus one.



We decided to leave a little early and Laurie went to the hospital (after tucking in me, Joe and Jack) to relieve her mom and stay overnight with Henry. Before I went to sleep Laurie had called to let me know they were taking Henry for a chest x-ray because she noticed his breathing was very labored. All night long no-one could get Henry comfortable. He had an oxygen mask on but he was still in trouble By this morning, Henry took a precipitous downturn. His blood gasses were drawn and it was obvious to the PICU doctors who were being consulted by the Peds staff that he needed to be intubated. They rushed him to the Intensive Care side of the floor. Before they could get the breathing tube into him, his pulse went faint, and his heart stopped beating and he stopped breathing. CPR was done and adrenaline was administered. They got his heart functioning again and proceeded to intubate him. He is now on a ventilator. In addition to the tube down his throat, a new central line was placed in his groin going up to his heart. Henry has been given medication to paralyze him, so his body can focus on essential life sustaining functions.

The preliminary judgment of the doctors is that Henry has an infection and when they administered antibiotics to treat that infection, toxins were released into his body. I think this is called sepsis or septic shock. There is a mass of fluid in his lung which they now are draining. He is in very critical condition. My sister flew in immediately. Laurie's sister, dad and my best friend Bill are all in transit. Henry isn't going to die. In fact, if the infection is pneumonia and they can treat it successfully, then hopefully the pain in his shoulder will be resolved. Whenever Henry has pnuemonia, his shoulder hurts him terribly.

Right now he is laying catatonic on the bed with a plastic pillow of warm air bringing up his body temp, which is kinda low. I am holding his hand (when not typing) and I talk to him a little bit, though I know he cannot hear me. I was just telling Laurie how a day or two ago, I told Henry that my goal was for him to feel well enough for me to give him a big hug. His body's fragility has robbed us of the physical contact that I love so much. Laurie said last night he sat on her lap on the wheelchair ride to radiology and she was in heaven. We're waiting for a blood transfusion, but in a snafu the blood bank hasn't readied any. He is stable. This is sad.

a good night overall. we made two adjustments last night. i asked the resident to figure out how they were keeping henry comfortable when the pancreatitis was just diagnosed. she came back and said the dose of morphine was higher last week. so she wrote him for more. then, when the nurse came in and asked if we wanted henry to get the morphine when he wakes up during the night, i said "no, just keep it coming, even if he is sleeping." i remember someone once said "stay ahead of the pain" and that has been my mantra of late. don't wait for him to wake up in agony. keep him in a comfort zone. it worked. we only got up for vitals and for peeing and pooping and when the nurse made noise. no long sessions of moaning and discomfort. there was a lot of sleep happening in this room last night. henry actually sounds/seems like his almost normal self this a.m. when he woke up to go poo. the anger, sadness and pain have subsided a little. maybe even his counts went up a bit to round out this very encouraging night. there's the miracle i was asking for.

happy hannukah!

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.

taking inventory. in the past month i have had tix but didn't go to...

vikings v. falcons
vikings v. packers
redskins v. rams
minnesota v. michigan (college)
fountains of wayne
kim richey

testimony to my optimism i guess.

henry's blood counts continue to plummet. the docs haven't a clue. his platelets were 8K this morning. possibly/probably the lowest since transplant. they want to do a bone marrow aspiration -- perhaps he has graft versus host disease in his marrow. that doesn't sound good, does it. i haven't been able to patch together more than 3 hours of consecutive sleep in 4 nights. i am burned out and don't think i am a good cheerleader for henry right now. he needs to be gently pushed and prodded and cajoled to help him get out of the hospital. whatever his physical problems, they are just totally crushed by his emotional upset. i think his insistence on morphine for the real or phantom pain (i think it is real but not that terrible, more like a "soreness") is the saddest thing to come along in a while. but i have long since learned not to doubt or second guess henry when it comes to pain. he fell last night after pooping and i had to quickly grap his arm to keep him from hitting the floor and ripping out his tubes. of course i had to grab him hard on the arm that is presenting him with so much pain. this is madness. henry slept a bit last night. i didn't. i was too scared of everything, of him waking up in pain or needing to poop, of him not making it out of minnesota.

pat is here tomorrow and i told laurie that i need to take a half day for myself. i am going to buy a winter coat and see if i can go to the calhoun beach club (our old apt.) and take a long sauna and whirlpool bath at the fitness club. i used to do that every other day (when i wasn't at the hospital with henry) when we were here in 2000 for transplant. i never got sick or burned out. i gotta say that pampering goes a long way in crappy times like these.

laurie is smart. she is trying to strategize how to get us home soon because she thinks that it will perk up henry. that is true but what nags at me is that we reach a certain point that we cannot bear being away and then the tradeoff is his physical well-being for his emotional health. my fear, of course, is getting him home and having him just get sick again. i think that has happened before. i kinda want to stick it out here a while longer to get those few "good weeks" in but being away from home my be doing everyone more harm than good. it is so hard to figure this all out. laurie usually has a good sense of what is best to do. i think i have more patience because i have more optimism. i keep thinking who cares about a week or month or year when it buys us a lifetime. maybe that isn't an option or the right way to think.

it is all very christmassy here, in the hospital and the ronald mcdonald house. i feel like a bagel eater among bacon eaters.last night i took the boys down to have our first communal dinner. santa claus showed up too. scared most of the kids. i couldn't identify any of the things that had been mashed into the dozen or so noodle and macaroni based dishes. the volunteers who (sweetly) donated the meal maybe should have coordinated a little better. instead of a bunch of brown things there could have been something green. jack wanted a salad which my dad made for him from the communal fridge. joe had some milk, two spoonfuls of yogurt and i ate celery. my dad scooped up a lot of the casserole looking stuff and chowed down. how come i didn't inherit his intestinal fortitude. laurie, henry, jack and i are as finicky as they come. there is hope for joe, though. there is this huge family of south dakota ranchers staying in the same part of the ronald mcdonald house as us. not much in common. laurie is down on them 'cause they don't do their dishes and leave their food out all night. they just sit outside in the below freezing temps and smoke. stress is one thing we have in common, i guess. overall, it is a great facility and the people are really nice. oif course yesterday we got the flyer under our door that some kid staying there had tested positive for chicken pox. i can imagine the shudder of fear that ran through every other adult in that house. luckily, it is very unlikely that joe was exposed.

joe seems to be doing the best of all of us. in the past two nights jack threw up all night and then emotionally cratered the next because we have lost his blanket in all of our moving around. laurie said he was sobbing last night. dealing with the emotional is so much harder than treating the physical ailments.

we're coming up on our one month anniversary here. let's hope things start to improve soon.

i finished my dinner - the dregs from the pretzel bag. god, my feet are freezing. i tried to grab two hot packs from the supply closet and put them in my shoes, but they've run out. henry is a heavy hot pack consumer. so why did this hospital have to be in minnesota when it could just as easily been in florida or california. and why are there no good looking people (other than laurie) with sick kids. it is probably that all of this is so trying it makes people look more drawn and forlorn than they normally are. but this kind of pain and suffering does appear to hit the less fortunate disproportionately. what's up with that. probably all of the medical needs of the rich and good looking are met in florida and california. liposuction, subtance abuse that sort of thing. i'll just have to settle for curling my toes around henry's very toasty urinal.

this is from the other night.

if you want to know what this life is like, the next ten minutes or so capture it as well as anything. i haven't gone to sleep yet because the night has been filled with anxiety, caregiving and trips down the hall to the washer dryer. i'm cleaning our clothes and henry's soiled underwear. he's been having accidents. it's the second night in a row with little-to-no sleep.i don't feel so great and am worried i might be getting sick. getting sick isn't an option because i'll be of no use to the person who really needs to be cared for. it is hard to get any sleep on my fold out chair which is a good foot shorter than i am.