Ford Riley Lakowski Couture
May 12, 2009 - July 5, 2010
*
Monday, July 5, 2010
Sunday, June 13, 2010
A long and drawn out sigh
We had come to a tentative, collective decision to take Ford off the ventilator today if he failed to show any signs of clinical improvement. To give him the benefit of the doubt they had decided to try him off his phenobarbital, just in case it was contributing to his sleepiness, and run him through a third CT scan to check the bleeding. We were told that a neurologist would come by and speak to us about the results of the CT scan, as well as conduct one more clinical examination before we would be approached by the intensivists about the next step.
We waited all day on pins an needles (a gargantuan understatement) until 4:30 before we got any sort of news.
The bleed seems to be finally resolving and Ford has reached "peak edema" (the maximum anticipated swelling in his brain 72 hours post-hemorrhage). Based on the pictures the neurologist explained that Ford's frontal and temporal lobes remained free of any apparent damage. Most of the blood had accumulated around his occipital and parietal lobes. What does this mean? Well, not a whole lot at this point, although she did suggest that it was good news he hadn't sustained any significant damage to his frontal lobe - which is responsible for higher level function and consciousness. It's hard to differentiate on a CT scan areas of infarct (permanent damage to brain tissue) and areas that have just accumulated fluid which will eventually reabsorb without a lasting effect. Her recommendation was that Ford go for an MRI later in the week which will give the best possible picture of how much of his brain remains functional.
Additionally, during her assessment of Ford, we witnessed a remarkable level of response that culminated in him getting so pissed off at all her poking and pinching that he woke up crying.
...
It's hard to describe what that moment was like, with half a dozen of us (nurses, fellows, Christa, me) crowded around his bed, fully anticipating and accepting his imminent death only to be each counseled in turn by this owl-eyed brain doctor that Ford was showing a stunning amount of intention and conscious reaction considering the magnitude of the hemorrhage and the current level of swelling in his head. She believes we will continue to see signs of improvement as the swelling begins to subside and that Ford might not be as badly damaged as everyone believed. I don't think there was one of us standing there who's jaw had not slackened to the floor.
Now before you all drop to your knees in thanks, or continue railing at the gates of some Almighty for compassion and benevolence, pleaseunderstand that Ford's hold on life is still incredibly tenuous and this turn of events is in many ways the worst case scenario.
It's not that we haven't spent the last few hours crying and hugging Ford in disbelief, our hearts swelling with unparalleled love for his tenacious perseverance and his dog-headed stubbornness in the face of death, it's that this is not the fairy tale miracle that people seemed to be hoping for. Ford's brain has been severely damaged, he has suffered two strokes and a massive bleed. Additionally his body is riddled with crippling disabilities and palliative patches. Rather than guarantee us an inevitable discharge and return to healthy, happy family life, this latest recovery means our long haul in the hospital is now more than ever far from over. It means potentially months more time in the ICU and, as we've become painful witnesses to over the last 1o months, that does not come without its cost.
I thought this was it - that there was no way that he could endure yet another massive insult. But once more we are limping back into a sustainable limbo and instead of feeling hopeful I am left bracing for the next traumatic event that may-or-may-not bring the end.
He may very well be the strongest baby in the world but I am nowhere near the strongest father.
I had said goodbye to Ford.
His resurrection at the hands of the neurologist has not brought him back to me, haloed and glowing with radiant energy. She has merely, ruthlessly, prolonged the hesitant and ghostly presence of the living dead - bartering the horror that I experience looking at him now with some vague diagnosis of "possible quality of life."
Last Monday, on my way home from the hospital, I watched a man standing next to me on the subway station platform commit suicide by diving off into the headlights of an arriving train. I watched his bag explode into a cloud of loose papers and his body disappear under the wheels. Two days later, after beating the odds and recovering from a heart transplant, my son's head imploded and he drifted towards death in a coma. Now again, against all odds, he's in some hazy wakened state, clawing inarticulately at the air and staring around the room with eyes that might not actually see anything. I feel like I'm rolling and flailing underwater, caught beneath some tremendous riptide and I can only surface from one nightmare into the next. I really don't know how much longer Christa and I can live like this before what remains of us, like Ford, fails to stand up against anyone's concept of a meaningful existence.
But we're going to stick by his side and hold his hand and help him through whatever is left of his life because we can't stop loving him in spite of all this agony. And we're going to do it alone because we can't handle having anyone near us at the moment - our heads are bursting with the pressure of coping and we have no resources left to share.
PLEASE! At least for the time being, refrain from posting any more comments about how you're praying for miracles. The ICU is as close a space to the raw, disgusting, physicality of life as you can get. Between Ford's scarred and bleeding body and the crowded network of machines that loom around him there is very little space for grace and spiritual healing. We are barely hanging on right now and that kind of sentiment just feels like a knife in the back.
We waited all day on pins an needles (a gargantuan understatement) until 4:30 before we got any sort of news.
The bleed seems to be finally resolving and Ford has reached "peak edema" (the maximum anticipated swelling in his brain 72 hours post-hemorrhage). Based on the pictures the neurologist explained that Ford's frontal and temporal lobes remained free of any apparent damage. Most of the blood had accumulated around his occipital and parietal lobes. What does this mean? Well, not a whole lot at this point, although she did suggest that it was good news he hadn't sustained any significant damage to his frontal lobe - which is responsible for higher level function and consciousness. It's hard to differentiate on a CT scan areas of infarct (permanent damage to brain tissue) and areas that have just accumulated fluid which will eventually reabsorb without a lasting effect. Her recommendation was that Ford go for an MRI later in the week which will give the best possible picture of how much of his brain remains functional.
Additionally, during her assessment of Ford, we witnessed a remarkable level of response that culminated in him getting so pissed off at all her poking and pinching that he woke up crying.
...
It's hard to describe what that moment was like, with half a dozen of us (nurses, fellows, Christa, me) crowded around his bed, fully anticipating and accepting his imminent death only to be each counseled in turn by this owl-eyed brain doctor that Ford was showing a stunning amount of intention and conscious reaction considering the magnitude of the hemorrhage and the current level of swelling in his head. She believes we will continue to see signs of improvement as the swelling begins to subside and that Ford might not be as badly damaged as everyone believed. I don't think there was one of us standing there who's jaw had not slackened to the floor.
Now before you all drop to your knees in thanks, or continue railing at the gates of some Almighty for compassion and benevolence, pleaseunderstand that Ford's hold on life is still incredibly tenuous and this turn of events is in many ways the worst case scenario.
It's not that we haven't spent the last few hours crying and hugging Ford in disbelief, our hearts swelling with unparalleled love for his tenacious perseverance and his dog-headed stubbornness in the face of death, it's that this is not the fairy tale miracle that people seemed to be hoping for. Ford's brain has been severely damaged, he has suffered two strokes and a massive bleed. Additionally his body is riddled with crippling disabilities and palliative patches. Rather than guarantee us an inevitable discharge and return to healthy, happy family life, this latest recovery means our long haul in the hospital is now more than ever far from over. It means potentially months more time in the ICU and, as we've become painful witnesses to over the last 1o months, that does not come without its cost.
I thought this was it - that there was no way that he could endure yet another massive insult. But once more we are limping back into a sustainable limbo and instead of feeling hopeful I am left bracing for the next traumatic event that may-or-may-not bring the end.
He may very well be the strongest baby in the world but I am nowhere near the strongest father.
I had said goodbye to Ford.
His resurrection at the hands of the neurologist has not brought him back to me, haloed and glowing with radiant energy. She has merely, ruthlessly, prolonged the hesitant and ghostly presence of the living dead - bartering the horror that I experience looking at him now with some vague diagnosis of "possible quality of life."
Last Monday, on my way home from the hospital, I watched a man standing next to me on the subway station platform commit suicide by diving off into the headlights of an arriving train. I watched his bag explode into a cloud of loose papers and his body disappear under the wheels. Two days later, after beating the odds and recovering from a heart transplant, my son's head imploded and he drifted towards death in a coma. Now again, against all odds, he's in some hazy wakened state, clawing inarticulately at the air and staring around the room with eyes that might not actually see anything. I feel like I'm rolling and flailing underwater, caught beneath some tremendous riptide and I can only surface from one nightmare into the next. I really don't know how much longer Christa and I can live like this before what remains of us, like Ford, fails to stand up against anyone's concept of a meaningful existence.
But we're going to stick by his side and hold his hand and help him through whatever is left of his life because we can't stop loving him in spite of all this agony. And we're going to do it alone because we can't handle having anyone near us at the moment - our heads are bursting with the pressure of coping and we have no resources left to share.
PLEASE! At least for the time being, refrain from posting any more comments about how you're praying for miracles. The ICU is as close a space to the raw, disgusting, physicality of life as you can get. Between Ford's scarred and bleeding body and the crowded network of machines that loom around him there is very little space for grace and spiritual healing. We are barely hanging on right now and that kind of sentiment just feels like a knife in the back.
Saturday, June 12, 2010
The vigil continues
Ford's sedation was turned off yesterday, to give his body a chance to show signs of life. He very quickly started to breathe on his own and we occasionally see his eyes twitching and feel his limbs move and flex. It's still too early to tell if it's intentional motion or just postural reflex. His blood pressure rises in response to stimulation - moving, pinching, etc - he coughs when he's suctioned and his pupils are sluggishly reactive to light. All of this shows a basic level of brain function but says little about the potential return of his consciousness or personality. Predictions are still hazy, mostly shrugs and wait-and-sees, but those are matched by the slow trickle of staff coming around to say goodbye to Ford without really saying goodbye.
Last night the nurse switched his crib for an adult sized bed so one of us could climb in and lay next to him. We haven't left his side much since Wednesday and are now going to be able to sleep with him at night instead of leaning uncomfortably on the crib rails, trying unsuccessfully to doze. We talk to him all the time and have been passing on your comments, telling him about all the people who are with him in spirit. We really appreciate hearing from so many of you over the last few days.
Things will probably continue like this over the weekend while we account each day for any signs of recovery and chart them against the overall poorness of his condition. Still, as before, there isn't a lot of hope and we are both being briefed, and bracing, for the inevitable "decision" that will have us moving through the exact same circumstances we had to endure with Emmett's death 4 years ago. It was hard enough the first time, I can't believe we're about to do it again.
Last night the nurse switched his crib for an adult sized bed so one of us could climb in and lay next to him. We haven't left his side much since Wednesday and are now going to be able to sleep with him at night instead of leaning uncomfortably on the crib rails, trying unsuccessfully to doze. We talk to him all the time and have been passing on your comments, telling him about all the people who are with him in spirit. We really appreciate hearing from so many of you over the last few days.
Things will probably continue like this over the weekend while we account each day for any signs of recovery and chart them against the overall poorness of his condition. Still, as before, there isn't a lot of hope and we are both being briefed, and bracing, for the inevitable "decision" that will have us moving through the exact same circumstances we had to endure with Emmett's death 4 years ago. It was hard enough the first time, I can't believe we're about to do it again.
Thursday, June 10, 2010
...
Ford is dying.
The bleeding in his head hasn't stopped, despite the neurosurgeons best efforts. It could take a few hours or a few days - no one's really sure - but we have officially entered the death watch.
The bleeding in his head hasn't stopped, despite the neurosurgeons best efforts. It could take a few hours or a few days - no one's really sure - but we have officially entered the death watch.
Ps
Ford has pulled some pretty crazy stunts before and lived to tell the tale. He just might surprise us again.
ohh no...
Ford has suffered a massive brain hemorrhage. He was taken to the OR around 3:30am so neurosurgery could remove a piece of his skull to suck out the blood. The surgeon described it as the worst bleed he's ever seen. At the moment no one has any idea how or why this happened. All day yesterday Ford was really sick, but all the symptoms pointed to infection and the doctors weren't much concerned beyond making sure he was on broad spectrum antibiotics. This is a huge surprise and a huge problem. As usual, they are are reluctant to speculate on how much function Ford has lost, but the surgeon suggested there would be significant damage to the right side of Ford's brain. When we pointed out to him that Ford had also suffered a massive stroke to the left side of his brain he seemed more than a little dissappointed and said: ...We'll see.Ford survived the operation and is stable in the CCCU, which is one hurdle crossed - they really didn't have much hope that he would last the night. He's just gone down for a CT scan so they can track the bleed and see if it's gotten any worse since they drained it. If it has the surgeon has told us that they will not operate again an that will be that for Ford.
But even if it hasn't gotten any worse there is still a significant chance that Ford has reached the end of his line. We might not know for weeks how much of his brain has been damaged or how functional he will be. Since he's ventilated he can be kept "alive" pretty well indefinitely, given his other organs hold their own, but it's unclear if he still has the capacity to breathe on his own anymore.
More wait and see, but the picture's looking pretty fucking dim right now.
Monday, June 7, 2010
The inevitable comedown - a mixed bag
Ford was reintubated this morning.
While his breathing wasn't getting markedly worse his daily x-rays showed almost total left lung collapse. This time the decision to put him back on the ventilator wasn't to help him breathe so much as inflate the collapsed area to prevent infection. If you recall, over the last 6 months Ford has frequently suffered from pneumonia because the sticky, fluid-laden sections of his lung are attractive to bacteria. With his immune system repressed to keep his body from rejecting his heart the doctors are anxious to keep him clear of any potential infection - which will hit him much harder now than in the past (and it was bad enough then, if you remember).
While we understand the risk/benefit balance here we're still pretty upset to see him back on the ventilator. He was just starting to vocalize again and hearing him laugh and cry was unbelievably uplifting.
So where do we go from here?
The short term plan is to keep him intubated for the week and recruit the left lung enough to give extubation a second try. The hope is that we just jumped gun this weekend and given a few more days with his new heart Ford's body might be able to adjust. But we've been in this boat before - for most of the year, in fact. So the hurry-up-and-wait scenario has lost a lot of its lustre. Then again, the other options involve surgeries and are pretty invasive. So wait and see is the easy choice.
Despite the changes Ford seems to be holding his own. Not only does he treat the breathing tube as though it's not even there, he spent the day wide awake and full of smiles - happily kicking his legs and playing with our faces, even sitting up in my lap for an hour, enraptured with the new perspective on the comings and goings in this room. It's clear he really doesn't know or care about what we feel he's missing, as long as there is someone around to pat his bum and talk to him - and his simple joy in the world is remarkable to experience in situations like these.
So we are looking at another month of ups and downs as they try to wean him off his ventilator dependency. The estimate is mid-July, and if nothing has resolved or changed by then we will revisit the surgical options. One is putting in a tracheotomy, which is a breathing tube in his neck that bypasses his nose/mouth and is a much more stable long-term option for keeping his lung inflated. The other is stenting open his left airway, which is still experiencing a mild amount of compression despite the transplant and, however unlikely, might be enough of an impediment to allow for the collapse.
While his breathing wasn't getting markedly worse his daily x-rays showed almost total left lung collapse. This time the decision to put him back on the ventilator wasn't to help him breathe so much as inflate the collapsed area to prevent infection. If you recall, over the last 6 months Ford has frequently suffered from pneumonia because the sticky, fluid-laden sections of his lung are attractive to bacteria. With his immune system repressed to keep his body from rejecting his heart the doctors are anxious to keep him clear of any potential infection - which will hit him much harder now than in the past (and it was bad enough then, if you remember).
While we understand the risk/benefit balance here we're still pretty upset to see him back on the ventilator. He was just starting to vocalize again and hearing him laugh and cry was unbelievably uplifting.
So where do we go from here?
The short term plan is to keep him intubated for the week and recruit the left lung enough to give extubation a second try. The hope is that we just jumped gun this weekend and given a few more days with his new heart Ford's body might be able to adjust. But we've been in this boat before - for most of the year, in fact. So the hurry-up-and-wait scenario has lost a lot of its lustre. Then again, the other options involve surgeries and are pretty invasive. So wait and see is the easy choice.
Despite the changes Ford seems to be holding his own. Not only does he treat the breathing tube as though it's not even there, he spent the day wide awake and full of smiles - happily kicking his legs and playing with our faces, even sitting up in my lap for an hour, enraptured with the new perspective on the comings and goings in this room. It's clear he really doesn't know or care about what we feel he's missing, as long as there is someone around to pat his bum and talk to him - and his simple joy in the world is remarkable to experience in situations like these.
So we are looking at another month of ups and downs as they try to wean him off his ventilator dependency. The estimate is mid-July, and if nothing has resolved or changed by then we will revisit the surgical options. One is putting in a tracheotomy, which is a breathing tube in his neck that bypasses his nose/mouth and is a much more stable long-term option for keeping his lung inflated. The other is stenting open his left airway, which is still experiencing a mild amount of compression despite the transplant and, however unlikely, might be enough of an impediment to allow for the collapse.
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