Head F**k

Do we complain too much? I feel sometimes like we need to suck it up and stick to posting photos of shiny, happy Ford, with comments like: He's had a rough week but our little trooper keeps on trucking!

But seeing as you're not around yet to answer one way or the other... here we go again!

I'm not sure I can trust that a week has past since we last updated the blog, it feels like a few hours at most. Though, our heads have been reeling from a series of near KO's delivered in rapid succession and you'd be better off being more suspicious of our current vertiginous perspective on things than the unlikely collapse of the time continuum.

It sort of feels like the parable of David and Goliath, only backwards - fitfully spun around - wherein David taps Goliath on the shoulder "Ahem, I believe you are recklessly endangering the lives of my family" and Goliath swiftly bashes in David's skull before moving on without a second look back at the twitching pulp of a person he just did in.

Am I being overly dramatic? You betcha. Nevertheless.

I arrived at the hospital early Monday morning and quickly unleashed my fury on anyone who foolishly took the time to ask me how we were doing. Since our two main point people (the transplant social worker and the CCCU's nurse practitioner) were both off duty this week my rage quickly took on the tactics of a flailing, panicked herd animal and by the end of the day news of the distempered parents in the back corner had spread unreliably up through the ranks. But my anger quickly fizzled in the face of the inevitable staff rotation. Ford now has, as of Monday, a brand new crew of doctors and fellows who will be following him until July. Doctors and fellows who have had the benefit of taking from their first impressions that we are hard-nosed and obsessively needy parents who expect every one of Ford's farts to be examined and considered as a contributing factor in his illness. They have so far been exceptionally kind and considerate and we have toyed with the thought that they might actually be forthcoming, open and honest with us about how much they value our presence on the ward. Still, on Tuesday we were suddenly moved out of the room we had shared with 3 other families to a large, private isolation room with two big windows and a TV - 6-figure accommodations in an ICU. Am I being unnecessarily wry in assuming that our cries of malpractice trumped Ford's 4 month old ARO infection in factoring how quickly we got quarantined? Maybe. Maybe not. But the timing is suspicious.

We spoke at length with the transplant nurse, who made quick work of distancing herself and the transplant team from having any responsibility or control over the events that had transpired. Still, she said, how about I arrange a meeting with the transplant team so we can sit down and catch up on Ford. You know, touch base, chit-chat. Just so you can know that we're still around and that we're still thinking a lot about Ford.

After meeting with the CCCU's charge nurse, it was also suggested that we have a comprehensive meeting from the critical care side of things to make sure we're all on the same page about what Ford's current issues are and that we all understand how the events of the last few weeks contribute to the big picture.

So far so good. Progress.

Then, after venting and explaining our concerns with the CCCU's social worker we had an impromptu meeting with the ward's senior intensivist. It was a calm and level headed recap of everything that happened, but still I left it feeling like I had been chastised for my irrational behaviour, slapped on the wrist for assuming I had any diagnostic prowess beyond 20/20 hindsight, applauded for my parental gut-instinct, and insulted for thinking the physicians in Vancouver, who had initial suggested Ford had a propensity to clot, but failed to provide any "scientific evidence" of a known disorder, were making anything but a reckless and undereducated guess at how to treat Ford with anti-coagulants. He applauded his staff and patted himself on the back for running an amazing ward, offered that he would tell his fellows to be a little nicer to us in the future, and rounded it off by saying that from his perspective no mistakes were made and that they had always been acting in Ford's best interest. And the kicker: Now that Ford had shown them that he had a propensity to clot they would begin to take it seriously and would reconsider withholding doses of his anti-coagulants. Same old bullshit. KO #1.

Yesterday we met with the transplant team, eager for an optimistic pick-me-up (as has thus far been typical of our meetings with them). Ford is still listed, we know that, and despite the last few weeks he'll still be a little superstar post-transplant. Ah, but not so. KO #2 comes from the lovely Dr. Dipchand, who after a two month hiatus has returned to our lives to deliver this lovely bomb: While Ford is still currently a candidate for transplant, the events of the last two weeks in addition to his course over the last 6 months put him at a much higher risk for post-op morbidity as well as significantly reduced quality of life. Whereas in December they anticipated his chances of surviving the procedure to be 90%, he has now entered a "gray area" and his chances are more like 50%. His chronic lung issues, which now include the need to re-plicate his diaphragm for the 3rd time, are not necessarily going to resolve with a new, smaller and fully functional heart. His clotting issues, which might be symptomatic of an underlying genetic disorder, and his chylothorax, who's return has been more surprising and troubling to the doctor's here than we were led to believe at first, are both serious complicating factors for Ford. She went on to cite (inaccurately, I add in his defense) that Ford has failed to show any signs of development over the last 6 months and that this, assuming his other complications fail to resolve with a new heart, will be a severely limiting factor in his quality of life -. ie., he might never learn to walk or talk. She felt it was time to reintroduce us to the option of compassionate (palliative) care. It could be an amazing time for us, to know that we weren't going to subject Ford to more damaging surgeries or invasive procedures, that they would manage his pain and his ventilation for as long as it took for "nature" (or some grossly mutated biomechanical hybrid of nature) to take it's course. We could take Ford home, get a portable ventilator for him, put in a tracheostomy to make his breathing a little less intrusive, continue with his maintenance drugs and just live with him until his heart gave out.

That was it. End of meeting. And we returned to Ford's bedside in tears, where we met our little saccharine son who promptly twisted the knife in our own hearts by reaching out to us with both arms, smiling when he saw us coming (a recent developmental milestone for him, so fuck you very much, Doctor).

We both feel hollowed out, disoriented and delusional.

We had a meeting today with the critical care staff, a larger, longer and less depressing meeting, that spoke frankly of Ford's current issues and how concerning they are, but emphasizing that they are still unknowns and that Ford could still recover from the transplant. We got the chance to ask more detailed questions about the challenges he faces and were given comprehensive and reasonable estimates that I'll spare you all here. Ford's physiotherapists were included in this meeting and we had a chance to talk long-term with them (which is something we'd never thought to do before). They agreed that Dr. Dipchand was wrong in suggesting Ford had made no progress in the last few months but emphasized that he still faced considerable obstacles developmentally. His estimates were surprising. If all of Ford's current issues were to resolve with transplant and he was put onto an optimal recovery course, they wouldn't expect to see him walking until he was about five years old, and that he would probably have life-long deficiencies with "independent ambulation." Since it is likely that Ford will not recover optimally he will face additional hurdles and might plateau developmentally sooner than anticipated. Then they also brought up palliative care, wanting to impress on us that it isn't as simple as "pulling the plug" (which was the expression I used when referencing our first son, Emmett), and that Ford might live for years in a state much similar to the one he's in now, but modified so that we can keep him with us at home.

I know I've mentioned it before, how we are painfully but still only, out of necessity, peripherally aware that the odds are slowly stacking up against Ford the longer we hang in this horrible limbo. The more we try new things and invariable watch them fail. But it was still unbelievably stunning to move through the last two days of briefings and get this updated picture of his frailty. I just can't reconcile how bad they feel things have gotten with how amazingly interactive and happy our baby has become.

This afternoon the "bereavement nurse" came to make molds of Ford's hands and feet. She was chipper and encouraging, but I couldn't get past her job title. To be fair we had asked to have the molds made a while ago, before we had a sense of how dire things were getting, and it was just coincidence that she turned up today to do it. It brought back haunting memories of the cast we made of Emmett's feet as she talked frankly and cheerfully about how important these mementos are for parents who know that their children are dying and that it was good that we were doing it. Adding as a swift afterthought ...even though Ford isn't technically dying.

She had no idea that we'd just spent the last two days inundated with serious talk about this place called a "gray area" that we had unwittingly stumbled into, or that we were saturated with thoughts of holding Ford like we held Emmett - feeling his body stiffen and it's temperature drop. That I was ferociously trying to reconcile the most poignant phrase of Emmett's autopsy report - Eyes: Unremarkable - with this squirming little boy who was pleading at me with anything but unremarkable eyes for the nurse to stop squishing his hands into warm, pink bowls of alginate. And then suddenly imagining him laying in bed for years, unable to vocalize or lift his head, or sit up, or do anything other than look at us and reach out excitedly, paw at our faces and pull on our hair while his legs kick enthusiastically. Expressing this simple gratitude for us, the architects of his life and death, drawing it up from some strange and unknowable corner of his self.