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.