Tuesday, December 10, 2002
well this isn't hollywood or hogwarts. my tears just didn't do it. nor did my kisses and hugs. this afternoon we spoke at length with henry's transplant doctor, john wagner, who told us he wasn't entirely convinced it was aspergillus. we decided (laurie wasn't too psyched, but did it for me) to go ahead with a lung biopsy to find out for certain if it is a bacterial or fungal infection. this was scheduled for tomorrow. about 20 minutes after we finished a BMT fellow came over to us to explain that they just received the results of another culture confirming the presence of aspergillus. that's it. no more. aspergillus is unbeatable, Fanconi anemia wins. this stupid genetic disease that i was sure was no match for the latest medicine and the greatest love beat us to a pulp. the ultimate defeat.
we are now focused on keeping henry comfortable. we'll discuss a strategy with the PICU attending for letting henry go gently. family members will start arriving tomorrow. we want to have everyone here when henry dies. we will have jack and joe front and center. laurie and i took jack to dinner tonight. jack drew a picture of the family, everyone has on kippot because of hannukah. henry has tubes and wires and is happy because he is out of the hospital.
i explained to jack that henry will indeed be happy to be out of the hospital and it will happen this week. i told him that henry fought very hard not to be sick but in the end the sickness was stronger. i told him that henry was coming home but he was not going to live any longer. i told him that we are going to have a funeral and we need jack to help bury henry just like he buried grandma. i told him that henry loves jack and henry knows that jack loves henry. he sat in laurie's lap with his arms around her and wept. i told him that he didn't need to be strong. laurie explained that she was crying because she is so sad and it is just fine for jack to cry as much as he needs.
i dropped laurie off at the hospital and went to take a shower at the ronald mcdonald house. the water would only get luke warm.
laurie is writing a eulogy. she is writing a book about our life trying to save henry's life. i started this diary to help her understand the chronology of this visit, which was supposed to be a short one, and what i have been feeling. i didn't know this would become the final chapter. as hard as it might seem to believe, i really thought henry would be president of the united states one day. i thought he had the wisdom and disposition for the job (like his mother, but i don't think she needs the headache).
i am not comfortable writing about him in the past tense. it'll take some getting used to. i don't think i'll be able to say anything at the funeral. i want to make a cd of henry's favorite music and have it duplicated and hand it out at the ceremony. then people can take it home and always think about this special guy every time they listen to the music. i know i'll be thinking of him every waking moment and when i sleep. i just want the good memories back. i know we rode the roller coaster at the mall of america last month. i just can't get the picture in my head.
we've been saying goodbye for a while now, but it isn't very easy. the fact that his body is here but everything else is checked out is a good thing. it gets you used to him not being around. jack has just come over and is going to have a sleepover at the hospital with me and laurie. tomorrow he has a class field trip to a nature center. he loves that stuff. he'll be okay. joe is probably too young to know anything is wrong. maybe he does and that is why he won't stop smiling and walking and giving us joy.
how incredibly lucky i've been to not only know henry, but to be loved by him and to be his constant companion for so long. after two years of hanging with henry, my best friend, i guess it is time for me to go home, love laurie, jack and joe, find a job and get on with life. so long my superhero.
Henry and I used to sing this together all the time.
You've got a friend in me.
You've got a friend in me.
When the road looks rough ahead,
And you're miles and miles from your nice warm bed.
You just remember what your old pal said.
Boy, you've got a friend in me.
Yeah, you've got a friend in me.
You've got a friend in me.
You've got a friend in me.
If you got troubles, I got 'em too.
There isn't anything I wouldn't do for you.
If we stick together we can see it through,
Cause you got a friend in me.
You got a friend in me.
Some other folks might be a little bit smarter than I am.
Bigger and stronger too.
Maybe, but none of them will ever love you the way I do,
It's me and you, boy.
And as the years go by,
Our friendship will never die.
You gonna see it's our destiny.
You've got a friend in me.
Yeah, You got a friend in me.
You got a friend in me.
henry just went down to CT. it is amazing how many photos i want to take. i want to stop time but it isn't working. laurie just went out and bought a camera and is doing the same. the impulse, the desire to capture and savor every moment is so strong. henry is a mess, but he is the most beautiful sight in the world to me.
we are waiting for them to read the ct scans and discuss our options. henry was really do so well. he was peeing. his body temp was normal, his potassium improved. we turned the corner.
snoopy is coming by to wave to henry.
now we wait.
we are waiting for them to read the ct scans and discuss our options. henry was really do so well. he was peeing. his body temp was normal, his potassium improved. we turned the corner.
snoopy is coming by to wave to henry.
now we wait.
laurie is on her way back. i have been sitting next to henry with my head on his hand, my tears soaking his skin. in the newest harry potter movie tears give him life and in the first pokemon movie tears bring ash back to life. we seemed to be doing so well. all of his labs were really good today and he has been peeing.
i have asked that dr. wagner come over to see us after we get the ct results. he will be able to advise us what henry's chances are better than anyone. he won't be looking at just one piece, the kidneys or the lungs. i wish david (rabbi) abramson wasn't in israel right now. we could use his help too.
laurie bought a camera because she was overcome with the desire to take pictures of him. he doesn't really look so good, but he is the most beautiful sight in the world to me. i don't know how i am going to let go, but if it has to happen i will.
i have asked that dr. wagner come over to see us after we get the ct results. he will be able to advise us what henry's chances are better than anyone. he won't be looking at just one piece, the kidneys or the lungs. i wish david (rabbi) abramson wasn't in israel right now. we could use his help too.
laurie bought a camera because she was overcome with the desire to take pictures of him. he doesn't really look so good, but he is the most beautiful sight in the world to me. i don't know how i am going to let go, but if it has to happen i will.
they just dropped the bomb. the preliminary results of the bronchial lavage is aspergillus fungus. from the first days of our understanding of FA and bone marrow transplants, the doctors always cited aspergillus as the major cause of death for Fanconi transplant patients. reported attributable mortality from invasive pulmonary aspergillosis has varied, but rates are as high as 95% in recipients of allogeneic bone-marrow transplants .
they are going to get a ct done and if it is localized and not spread, they will operate and remove that part of his lung. you can imagine the risks associated with this kind of major surgery. i have a sense that laurie might want to let him go with dignity and peace and not subject him to this. this will be a most difficult conversation.
please pray or think good thoughts or whatever. i wish it wasn't this. i love my son so much.
they are going to get a ct done and if it is localized and not spread, they will operate and remove that part of his lung. you can imagine the risks associated with this kind of major surgery. i have a sense that laurie might want to let him go with dignity and peace and not subject him to this. this will be a most difficult conversation.
please pray or think good thoughts or whatever. i wish it wasn't this. i love my son so much.
there's another surgeon here and the renal team just came in. henry has acute tubular necrosis which is a kidney disorder involving damage to the renal tubule cells, resulting in acute kidney failure. everyone feels he is "so far behind" that we really need to get the dialysis going right away. surgery is scheduled for late this afternoon. laurie is getting the crown fixed on her tooth and then will be back. we made an appointment for jack to see one of the child-family life specialists on the floor later today.
they came in to do an ultrasound a little while ago and the technician asked, "where is henry's kidney." that happens every single time they do an abdomenal ultrasound. henry's kidney is a pelvic or ectopic kidney and it is very far down. once they thought he was born with only one 'cause they coudn't find it.
we sit right next to the ventilator and it puff puff puffs away 24/7. it sounds like a small steam locomotive. the little engine that could. henry's gotta make it over that hill.
joe, as i explained earlier, is a great eater and probably doing the best of all of us. he is thriving, taking his first real steps right outside of henry's hospital room. henry's room is at the very end of the hallway. here is a photo taken in the "lounge" area that is just outside our room. the windows overlook the big muddy, which is plenty big, but not too muddy up this far north. it is a spectacular view and we get nice sunsets over the river. for some reason i really like driving across the mississippi all of the time. once, when we were here last spring, jack and i walked down to the river from the hospital and skipped rocks. very huck finn moment. most of the rooms on the unit are big with a bunch of babies in incubators or cribs under warmers. it is almost like henry is the senior resident here. one little girl down the hall was in surgery for 28 hours over the past 2 days for her heart. amazing. i almost forget about henry's stay at boston children's when he was just 6 mos old getting his heart fixed.
i was looking up acute tubular necrosis and it was linked to this page on medline about septic shock. it is a good overview of why we are here. it says that you have a 50-50 chance of surviving, and frankly, those are better odd than we've had for a lot of other stuff we've been through, though this is the worst thing ever to happen to henry, by far. the real wild card remains the infection. they still haven't cracked that nut. nothing has "grown out" of the cultures they've taken.
Definition
Septic shock is a serious, abnormal condition that occurs when an overwhelming infection leads to low blood pressure and low blood flow. Vital organs, such as the brain, heart, kidneys, and liver may not function properly or may fail. Decreased urine output from kidney failure may be one manifestation.
Causes and risks
Septic shock occurs most often in the very old and the very young. It also occurs in people with underlying illnesses. Any bacterial organism can cause septic shock. Fungi and (rarely) viruses may also cause this condition. Toxins released by the bacteria or fungus may cause direct tissue damage, and may lead to low blood pressure and/or poor organ function. These toxins also produce a vigorous inflammatory response from the body which contributes to septic shock.
Risk factors include underlying illnesses, such as diabetes; hematologic cancers (lymphoma or leukemia); and other malignancies and diseases of the genitourinary system, liver or biliary system, and intestinal system. Other risk factors are recent infection, prolonged antibiotic therapy, and having had a recent surgical or medical procedure.
Prompt treatment of infections caused by bacteria is helpful. However, many cases cannot be prevented.
Symptoms
Fever, chills
Feeling light-headed
Shortness of breath
Palpitations
Cool, pale extremities
Elevated temperature
Restlessness, agitation, lethargy, or confusion
Some physical findings may be easily detected:
Rapid heart rate
Low blood pressure, especially when standing
Low urine output
Signs and tests
Blood gases may reveal low oxygen concentration and acidosis
Blood cultures to detect infection
Blood pressure readings are low
Chest X-ray may reveal pneumonia or pulmonary edema
The blood count may reflect infection
Blood tests may reflect poor organ function or organ failure
Treatment
Septic shock is a medical emergency, and patients are usually admitted to intensive care.
The objective of treatment is to:
Provide oxygen, and treat respiratory distress if present
Administer intravenous fluids to restore blood volume, and vasoactive drugs to treat low blood pressure
Treat underlying infections with antibiotics
Support any poorly functioning organs
Hemodynamic monitoring, to evaluate the pressures in the heart and lungs in treatment of shock, may be required. This can only be done with specialized equipment and intensive care nursing.
Prognosis
Septic shock has a high death rate, exceeding 50%, depending on the type of organism causing the infection and the degree of organ failure.
Complications
Respiratory failure, cardiac failure, or any other organ failure can occur.
they came in to do an ultrasound a little while ago and the technician asked, "where is henry's kidney." that happens every single time they do an abdomenal ultrasound. henry's kidney is a pelvic or ectopic kidney and it is very far down. once they thought he was born with only one 'cause they coudn't find it.
we sit right next to the ventilator and it puff puff puffs away 24/7. it sounds like a small steam locomotive. the little engine that could. henry's gotta make it over that hill.
joe, as i explained earlier, is a great eater and probably doing the best of all of us. he is thriving, taking his first real steps right outside of henry's hospital room. henry's room is at the very end of the hallway. here is a photo taken in the "lounge" area that is just outside our room. the windows overlook the big muddy, which is plenty big, but not too muddy up this far north. it is a spectacular view and we get nice sunsets over the river. for some reason i really like driving across the mississippi all of the time. once, when we were here last spring, jack and i walked down to the river from the hospital and skipped rocks. very huck finn moment. most of the rooms on the unit are big with a bunch of babies in incubators or cribs under warmers. it is almost like henry is the senior resident here. one little girl down the hall was in surgery for 28 hours over the past 2 days for her heart. amazing. i almost forget about henry's stay at boston children's when he was just 6 mos old getting his heart fixed.
i was looking up acute tubular necrosis and it was linked to this page on medline about septic shock. it is a good overview of why we are here. it says that you have a 50-50 chance of surviving, and frankly, those are better odd than we've had for a lot of other stuff we've been through, though this is the worst thing ever to happen to henry, by far. the real wild card remains the infection. they still haven't cracked that nut. nothing has "grown out" of the cultures they've taken.
Definition
Septic shock is a serious, abnormal condition that occurs when an overwhelming infection leads to low blood pressure and low blood flow. Vital organs, such as the brain, heart, kidneys, and liver may not function properly or may fail. Decreased urine output from kidney failure may be one manifestation.
Causes and risks
Septic shock occurs most often in the very old and the very young. It also occurs in people with underlying illnesses. Any bacterial organism can cause septic shock. Fungi and (rarely) viruses may also cause this condition. Toxins released by the bacteria or fungus may cause direct tissue damage, and may lead to low blood pressure and/or poor organ function. These toxins also produce a vigorous inflammatory response from the body which contributes to septic shock.
Risk factors include underlying illnesses, such as diabetes; hematologic cancers (lymphoma or leukemia); and other malignancies and diseases of the genitourinary system, liver or biliary system, and intestinal system. Other risk factors are recent infection, prolonged antibiotic therapy, and having had a recent surgical or medical procedure.
Prompt treatment of infections caused by bacteria is helpful. However, many cases cannot be prevented.
Symptoms
Fever, chills
Feeling light-headed
Shortness of breath
Palpitations
Cool, pale extremities
Elevated temperature
Restlessness, agitation, lethargy, or confusion
Some physical findings may be easily detected:
Rapid heart rate
Low blood pressure, especially when standing
Low urine output
Signs and tests
Blood gases may reveal low oxygen concentration and acidosis
Blood cultures to detect infection
Blood pressure readings are low
Chest X-ray may reveal pneumonia or pulmonary edema
The blood count may reflect infection
Blood tests may reflect poor organ function or organ failure
Treatment
Septic shock is a medical emergency, and patients are usually admitted to intensive care.
The objective of treatment is to:
Provide oxygen, and treat respiratory distress if present
Administer intravenous fluids to restore blood volume, and vasoactive drugs to treat low blood pressure
Treat underlying infections with antibiotics
Support any poorly functioning organs
Hemodynamic monitoring, to evaluate the pressures in the heart and lungs in treatment of shock, may be required. This can only be done with specialized equipment and intensive care nursing.
Prognosis
Septic shock has a high death rate, exceeding 50%, depending on the type of organism causing the infection and the degree of organ failure.
Complications
Respiratory failure, cardiac failure, or any other organ failure can occur.
how cool is the internet. the nurse who was in the picu when henry first got here, jody, already knew about him. a week ago she had been researching fanconi anemia online because there are so many fa patients here and she came across henry's website. of course she had no idea she would ever meet him. when the doctors were discussing him when they brought him over, they knew he had a heart defect and she piped in that is was tetralogy of fallot and that it had been repaired. beautiful.
the surgeon is here. gotta go sign consent for them to cut him open again.
the surgeon is here. gotta go sign consent for them to cut him open again.
when i was trying to sleep, i kept trying to list in my head some of henry's favorite things
mommy
his girlfriend, bella
ari, simon
small shiny objects
joe
pokemon
drawing pictures
taking pictures (henry got a cool Polaroid Mio Camera for hannukah)
star wars
harry potter
disneyworld
baseball, cal ripken
dvds
school
light sabers
yoda
cartoons
spongebob
watches
patagonia underwear
his shiny nike sneakers
his blankets
batman
sweat pants and sweat shirts
his birthday
swimming at nana's
aunt alice's and uncle peter's beach house
trading cards
cactus cantina
suzanne and meghan
the manhattan pokemon store
me
jack
marbles
currency from around the world
reading
encyclopedia brown
your bed at home
electric blankets
funland at the beach
max's ice cream in glover park
ice water
catching fireflies
shells
eating crackers
dressing in costumes
i am reading this aloud to henry to remind him why he has to be strong and get better. what awaits him on the other side. i am all for bribing if it works. i'm going to add to this list as henry tells me more.
mommy
his girlfriend, bella
ari, simon
small shiny objects
joe
pokemon
drawing pictures
taking pictures (henry got a cool Polaroid Mio Camera for hannukah)
star wars
harry potter
disneyworld
baseball, cal ripken
dvds
school
light sabers
yoda
cartoons
spongebob
watches
patagonia underwear
his shiny nike sneakers
his blankets
batman
sweat pants and sweat shirts
his birthday
swimming at nana's
aunt alice's and uncle peter's beach house
trading cards
cactus cantina
suzanne and meghan
the manhattan pokemon store
me
jack
marbles
currency from around the world
reading
encyclopedia brown
your bed at home
electric blankets
funland at the beach
max's ice cream in glover park
ice water
catching fireflies
shells
eating crackers
dressing in costumes
i am reading this aloud to henry to remind him why he has to be strong and get better. what awaits him on the other side. i am all for bribing if it works. i'm going to add to this list as henry tells me more.
30 cc of pee overnight. wahooo! henry must have heard everyone talking about surgery and decided to take matters into his own hands. if i am not mistaken, i would say his kidneys are slowly kicking in. hopefully it is enough to stave off dialysis and to give his body the relief from fluid buildup it needs. i am really looking forward to speaking with renal this morning. the tv is on and that is rare -- for 2 days i didn't even know there was one in the room. the today show. heatwave alert for minneapolis. it is going up to 45 degrees today. laurie slept over at ronald mcdonald last night and i slept here. i just called to update her and she was still sleeping. i thought they'd be up getting jack ready for school, but he told mom that dad said he didn't have to go today. which, technically, is correct. i told him yesterday that if he went then, we would reevaluate whether he had to go back the rest of the week. he said he "hated" school. i think he hates being away from us, hates seeing henry like this, being away from home, being away from his school, his friends, his lego, his power rangers, his bed.
henry has been taken off his sedation drugs but he is still out of it. the nurses explain that because his body isn't processing fluids, the drugs are still lingering and keeping him down. everyone wants some more responsiveness and maybe that will come today. i have a lot of confidence in henry. i have been whispering in his ear that if he gets tough and makes it out of here we will pick up the stakes and move to disneyworld. we'll set up house right in cinderella's castle. since we honored jack's promise and he didn't have to go back to school, we have no option but to ready ourselves for relocation to florida.
i look forward to reporting more pee and more awakedness.
henry has been taken off his sedation drugs but he is still out of it. the nurses explain that because his body isn't processing fluids, the drugs are still lingering and keeping him down. everyone wants some more responsiveness and maybe that will come today. i have a lot of confidence in henry. i have been whispering in his ear that if he gets tough and makes it out of here we will pick up the stakes and move to disneyworld. we'll set up house right in cinderella's castle. since we honored jack's promise and he didn't have to go back to school, we have no option but to ready ourselves for relocation to florida.
i look forward to reporting more pee and more awakedness.