well, i said i'd come back and finish writing the whole story, so here it is...
this, as best as i can recollect, is the tale of my dad's last weeks and passing, and what i know of him since.
let's see... about 6 weeks ago dad came home from the cardiologist's office (a regular appointment) and upon returning changed his clothes. before he had even emerged from his bedroom he called for mom to come in. he had developed a blood clot in his right calf and "it was gone" (the circulation). one easy way to tell the condition of his circulation in that leg was to feel the aneurism below his knee... as long as it throbbed and pulsed, he had circulation... it was still. so we quickly got ourselves ready and piled into the car bound for allegheny general hospital in pittsburgh for an emergency visit to the vascular surgeon.
on the ride down i felt more of a sense of panic than previous similar incidents. i proceeded to pray fervently and call in nearly every spirit ancestor and god form i could think of to make this NOT be the time that cost dad his leg. finally we arrived at the hospital and dad WALKED in on his own two feet - though his leg had to have been cramping terribly after an hour with no blood flow already. finally we got to see the doctor. doppler studies were done confirming that the circulation was absent. he was sent down to angiography to determine the exact location and severity of the blockage(s). from there he was taken directly to surgery where they were able to restore his circulation. in the process they removed vein from his upper left arm and relocated it to his right ankle. the surgery was a complete success - even at the very last he had better pulses in his foot than he had in years.
after surgery they brought him up to the trauma ICU - where he was to spend his last weeks alive. post operation he was fine... perhaps a little difficulty breathing, but fine. over the course of the next several days his breathing got progressively worse, his kidneys and liver began to malfunction. he became jaundiced to the point of crying yellow tears. their diagnosis: amniodarone toxicity and ARDS (acute respiratory distress syndrome). one of his anti-arrhythmic medications had stopped working and begun to poison him. they, of course, immediately stopped administration of the drug - but that particular medication lingers in the body for months (up to 6 months to clear the body under optimal conditions) and continues to do damage as long as it is present. eventually (a few days later) he needed to be put on a "bipap" machine to assist his breathing (high pressure oxygen via suction mask). still his condition deteriorated - several days later he had to be intubated and placed on a ventilator. during this time his thyroid gland also became hyperactive, producing 2-3 times too much hormone and poisoning him further - compounding the damage from the amniodarone. the doctors decided it was necessary to remove his thyroid completely, and did so... his "numbers" got better, but his overall condition continued to deteriorate. weeks later his thyroid hormone levels were still so high that he didn't need the artificial supplement hormones. over the course of those weeks he also gained nearly 50 pounds in fluids alone. it bubbled under his skin in what they call "third tissue" and seeped from even the oldest of his scars. even the slightest touch tore his skin or severely bruised it. his kidneys had completely ceased to function.
on sunday march 29th mom and i went in for the 10 AM visit and were told by the nurse that he hadn't tolerated his morning routine that day - when she rolled him over to clean him up for the day she feared that he would "code". a nephrologist (kidney specialist) came to talkto us about putting him on dialysis. he told us that it would be merely ANOTHER means of life support, but wouldn't heal his kidneys (let alone his liver, heart, or lungs). moreover the condition of his kidneys was such that he would inevitably go into cardiac arrest causing his pacemaker/defibrulator (ICD) to fire up to 9 times at increasing voltages -- something that dad feared more than death. i should mention that the night before i had a dream of my grandmother and grandfather (his mom and dad - both deceased) were standing at the head of his ICU bed looking down on him with love and comfort, and calmly pleading with me - silently.
when they had intubated dad the had to sedate him, he was semi-conscious, but not lucid most of the time. i'm still unconvinced that he hadn't had a serious stroke (one night during visitation his eyes were unequal and unreactive, but i couldn't get any medical professionals to pay sufficient attention to that potential to run tests). but he was able to communicate (sometimes relevantly) by nodding and/or shaking his head (yes/no) when asked questions. he couldn't lift his hands from the bed to point at letters ouija-board-style like when they first intubated. the wednesday before he passed during every visitation he "said" that he was ready to quit fighting, that he wanted off the machines, that he was ready to die and go to heaven, and that he wanted mom and i to let him go. we scheduled a meeting with his doctors to discuss implementing his advance directive ("living will"). the doctors had been offering contradictory diagnoses for weeks. his cardiologist (dr. cheneridas) maintained that this was the end, that is the ARDS didn't kill him he would need 24hour advanced nursing care in a specialized facility until such time (less than a year) as his pacemaker needed replacing (it was working far harder than it was intended, as his condition had severely deteriorated from the time of its implanting). dr. cheneridas felt that dad could not survive that surgery, and couldn't live without it. he felt that dad's wishes in this circumstance were clearly to not continue. dr. veynovich, the pulmonologist, disagreed. he felt that the lung damage could be healed if they could keep his other systems going long enough. he claimed that to stop support measures at that point would be murder, illegal and unethical. mom and i were beside ourselves, the doctors agreed to disagree, shook hands and departed. at that point we decided to leave things status quo, but the following sunday after talking to the nephrologist we deicded that to prolong dad's suffering was what should be considered unethical. he had no reasonable chance for significant recovery, so we asked that the cardiologist initiate "comfort measures" and deactivate his ICD. the pulmonologist fought us on it, not finally consenting until i had PRACTICALLY threatened to fire him. i think my exact words were "your opinions and services may no longer be required".
it was tough. on me and mom.
they extubated him, administered a dose of fentynyl, and deactivated his pacemaker. within less than 5 minutes he was completely gone. holding his hand and praying to the ancestors, God and goddess, i watched his heart rhythm stop, his oxygenation drop to zero, and his respirations cease. due to the amount of fluid he had put on and the condition of his body because of it, we learned later that night, he would have to be cremated as it would be impossible to embalm him - and in PA you get no choice, it has to be one or the other.
it still disturbs me greatly that after 36 years as a firefighter the fire finally got him, in the end. i also can't help but consider our family's curse - my great-great-grandfather, great-grandfather, grandfather, and dad have all died at age 57. my uncle seems to have escaped (at age 63, but is far from healthy). i have no doubt that the "legacy" passes to me.
thursday was the funeral. i took a percocet and was blessedly numb. it was very difficult pollishing his fire-chief's helmet and preparing his turnout gear, but he always wanted a traditional fire funeral, and with the exception of the bagpipes (a concession to my mom) he got it, right down to a final ride on the firetruck (1203, which he helped design and purchase in his tenure as chief) which brought his ashes home to us after the service.
it bothered me that no one stood to speak of him - to share stories of his inspirational and heroic nature, or his tendency to be a real sonofabitch at times. i simply could't speak at that point, or i may have said so. i'll say it now - dad was a hero to me in every way imaginable. he was a better man than i can ever hope to be, and a better father than i ever deserved. if, in my life, i can do half as much for others and half as selflessly, i will consider it a success.
it's especially difficult right now because of the uncertainty of mom's and my situation. we'll likely lose the house. mom will have to move in with grandma, and i'm not sure yet what i'll do. not only have we lost dad's physical presence but we may lose what's left of our lives together, too.
last night/ this morning i had a dream wherein my dad came to visit me. i was in my bedroom which became his hospital room. i was holding his hand, when suddenly there he was - healthy and whole again. he lit a cigarrette and we talked as i held the hand of the body that had been his. i don't remember everything that was said, but i know that before i awoke he gave me a check with the word "surprise" in the memo field, and said "you really didn't think i wouldn't take care of you, did you?". i woke up. crying. i had been crying while i was asleep judging from the amount of wetness on my pillow.
i don't believe that he's gone. more to the point, i believe that his spirit is still here - one with the spirit of all things, and united with our ancestors and those of all our Relations to care for and sustain that which is still physical. it doesn't make things any easier.
i do believe that his suffering is done, and that is the only gift we could have given him.
i love him. i miss him. and i don't know what i'll do without him tangibly here.
in nomine patri, et filii, et spiritus sanctus - in paece requiescat. y ytgdl, y ytgdsh.
let's see... about 6 weeks ago dad came home from the cardiologist's office (a regular appointment) and upon returning changed his clothes. before he had even emerged from his bedroom he called for mom to come in. he had developed a blood clot in his right calf and "it was gone" (the circulation). one easy way to tell the condition of his circulation in that leg was to feel the aneurism below his knee... as long as it throbbed and pulsed, he had circulation... it was still. so we quickly got ourselves ready and piled into the car bound for allegheny general hospital in pittsburgh for an emergency visit to the vascular surgeon.
on the ride down i felt more of a sense of panic than previous similar incidents. i proceeded to pray fervently and call in nearly every spirit ancestor and god form i could think of to make this NOT be the time that cost dad his leg. finally we arrived at the hospital and dad WALKED in on his own two feet - though his leg had to have been cramping terribly after an hour with no blood flow already. finally we got to see the doctor. doppler studies were done confirming that the circulation was absent. he was sent down to angiography to determine the exact location and severity of the blockage(s). from there he was taken directly to surgery where they were able to restore his circulation. in the process they removed vein from his upper left arm and relocated it to his right ankle. the surgery was a complete success - even at the very last he had better pulses in his foot than he had in years.
after surgery they brought him up to the trauma ICU - where he was to spend his last weeks alive. post operation he was fine... perhaps a little difficulty breathing, but fine. over the course of the next several days his breathing got progressively worse, his kidneys and liver began to malfunction. he became jaundiced to the point of crying yellow tears. their diagnosis: amniodarone toxicity and ARDS (acute respiratory distress syndrome). one of his anti-arrhythmic medications had stopped working and begun to poison him. they, of course, immediately stopped administration of the drug - but that particular medication lingers in the body for months (up to 6 months to clear the body under optimal conditions) and continues to do damage as long as it is present. eventually (a few days later) he needed to be put on a "bipap" machine to assist his breathing (high pressure oxygen via suction mask). still his condition deteriorated - several days later he had to be intubated and placed on a ventilator. during this time his thyroid gland also became hyperactive, producing 2-3 times too much hormone and poisoning him further - compounding the damage from the amniodarone. the doctors decided it was necessary to remove his thyroid completely, and did so... his "numbers" got better, but his overall condition continued to deteriorate. weeks later his thyroid hormone levels were still so high that he didn't need the artificial supplement hormones. over the course of those weeks he also gained nearly 50 pounds in fluids alone. it bubbled under his skin in what they call "third tissue" and seeped from even the oldest of his scars. even the slightest touch tore his skin or severely bruised it. his kidneys had completely ceased to function.
on sunday march 29th mom and i went in for the 10 AM visit and were told by the nurse that he hadn't tolerated his morning routine that day - when she rolled him over to clean him up for the day she feared that he would "code". a nephrologist (kidney specialist) came to talkto us about putting him on dialysis. he told us that it would be merely ANOTHER means of life support, but wouldn't heal his kidneys (let alone his liver, heart, or lungs). moreover the condition of his kidneys was such that he would inevitably go into cardiac arrest causing his pacemaker/defibrulator (ICD) to fire up to 9 times at increasing voltages -- something that dad feared more than death. i should mention that the night before i had a dream of my grandmother and grandfather (his mom and dad - both deceased) were standing at the head of his ICU bed looking down on him with love and comfort, and calmly pleading with me - silently.
when they had intubated dad the had to sedate him, he was semi-conscious, but not lucid most of the time. i'm still unconvinced that he hadn't had a serious stroke (one night during visitation his eyes were unequal and unreactive, but i couldn't get any medical professionals to pay sufficient attention to that potential to run tests). but he was able to communicate (sometimes relevantly) by nodding and/or shaking his head (yes/no) when asked questions. he couldn't lift his hands from the bed to point at letters ouija-board-style like when they first intubated. the wednesday before he passed during every visitation he "said" that he was ready to quit fighting, that he wanted off the machines, that he was ready to die and go to heaven, and that he wanted mom and i to let him go. we scheduled a meeting with his doctors to discuss implementing his advance directive ("living will"). the doctors had been offering contradictory diagnoses for weeks. his cardiologist (dr. cheneridas) maintained that this was the end, that is the ARDS didn't kill him he would need 24hour advanced nursing care in a specialized facility until such time (less than a year) as his pacemaker needed replacing (it was working far harder than it was intended, as his condition had severely deteriorated from the time of its implanting). dr. cheneridas felt that dad could not survive that surgery, and couldn't live without it. he felt that dad's wishes in this circumstance were clearly to not continue. dr. veynovich, the pulmonologist, disagreed. he felt that the lung damage could be healed if they could keep his other systems going long enough. he claimed that to stop support measures at that point would be murder, illegal and unethical. mom and i were beside ourselves, the doctors agreed to disagree, shook hands and departed. at that point we decided to leave things status quo, but the following sunday after talking to the nephrologist we deicded that to prolong dad's suffering was what should be considered unethical. he had no reasonable chance for significant recovery, so we asked that the cardiologist initiate "comfort measures" and deactivate his ICD. the pulmonologist fought us on it, not finally consenting until i had PRACTICALLY threatened to fire him. i think my exact words were "your opinions and services may no longer be required".
it was tough. on me and mom.
they extubated him, administered a dose of fentynyl, and deactivated his pacemaker. within less than 5 minutes he was completely gone. holding his hand and praying to the ancestors, God and goddess, i watched his heart rhythm stop, his oxygenation drop to zero, and his respirations cease. due to the amount of fluid he had put on and the condition of his body because of it, we learned later that night, he would have to be cremated as it would be impossible to embalm him - and in PA you get no choice, it has to be one or the other.
it still disturbs me greatly that after 36 years as a firefighter the fire finally got him, in the end. i also can't help but consider our family's curse - my great-great-grandfather, great-grandfather, grandfather, and dad have all died at age 57. my uncle seems to have escaped (at age 63, but is far from healthy). i have no doubt that the "legacy" passes to me.
thursday was the funeral. i took a percocet and was blessedly numb. it was very difficult pollishing his fire-chief's helmet and preparing his turnout gear, but he always wanted a traditional fire funeral, and with the exception of the bagpipes (a concession to my mom) he got it, right down to a final ride on the firetruck (1203, which he helped design and purchase in his tenure as chief) which brought his ashes home to us after the service.
it bothered me that no one stood to speak of him - to share stories of his inspirational and heroic nature, or his tendency to be a real sonofabitch at times. i simply could't speak at that point, or i may have said so. i'll say it now - dad was a hero to me in every way imaginable. he was a better man than i can ever hope to be, and a better father than i ever deserved. if, in my life, i can do half as much for others and half as selflessly, i will consider it a success.
it's especially difficult right now because of the uncertainty of mom's and my situation. we'll likely lose the house. mom will have to move in with grandma, and i'm not sure yet what i'll do. not only have we lost dad's physical presence but we may lose what's left of our lives together, too.
last night/ this morning i had a dream wherein my dad came to visit me. i was in my bedroom which became his hospital room. i was holding his hand, when suddenly there he was - healthy and whole again. he lit a cigarrette and we talked as i held the hand of the body that had been his. i don't remember everything that was said, but i know that before i awoke he gave me a check with the word "surprise" in the memo field, and said "you really didn't think i wouldn't take care of you, did you?". i woke up. crying. i had been crying while i was asleep judging from the amount of wetness on my pillow.
i don't believe that he's gone. more to the point, i believe that his spirit is still here - one with the spirit of all things, and united with our ancestors and those of all our Relations to care for and sustain that which is still physical. it doesn't make things any easier.
i do believe that his suffering is done, and that is the only gift we could have given him.
i love him. i miss him. and i don't know what i'll do without him tangibly here.
in nomine patri, et filii, et spiritus sanctus - in paece requiescat. y ytgdl, y ytgdsh.