For better and for worse

We are frustrated and confused.

Just over a week ago we sat down in a tiny room with Dr. Human and he told us that Ford wasn't going to get better if he continued down the path that they'd started him on. In his opinion transplant was our only remaining surgical option.

Then he also suggested that perhaps we'd done enough to Ford and that given all the complications it might be inhumane to keep cutting him open and rearranging things, reasoning that every time they did so they were slightly compromising his future quality of life. He offered us the choice to withdraw treatment and keep Ford comfortable until he eventually died.

So we rushed out here under the pretense that the emergency was as dire as it could get...

and now?

Apparently Ford is fine.

The Cardiologists here don't see any sign of heart failure, his breathing is perfect, he's been weaned off of the epinephrine and milrinone, the morphine is coming down, his feeds are almost back to their maximum, he's being switched back to all his old medications, and none of this seems to be bothering him in the slightest. He's started smiling again, is wiggling and kicking with his old vigor, is grabbing with both hands. So the big plan that we were waiting for? Nothing. They're going to do nothing.

Obviously we should be rejoicing and hugging each other and congratulating Ford and cheering him on. But it feels instead like the wind has been knocked out of me by the hardest punch to the gut I've ever felt.

When I tried to explain to Dr. Dipchand that this made no sense, how could each hospital come to such radically different conclusions just days apart from each other? She smiled and said "it must be the Toronto air" and left.

While he was telling us about "compassionate care" Dr. Human also suggested that, while clearly they had put Ford through hell, maybe this was too much for us as a family as well, that we ought to think about that too - could we handle another major surgery with a long, hard recovery? We laughed it off at the time. Never mind us, of course we can do it, we're here for Ford and that's it.

But now I just don't know. It's too easy to feel caught up in the energy of major changes, when things are presented as clearly being either life or death and the adrenaline kicks in. But now we're back in this ambiguous middle ground where he is not quite sick and not quite well. And he has been this way more or less his whole life. We're being moved out of the CCCU today (or if not today then tomorrow) and upstairs to the ward where we'll have to stay confined with him all the time in the small room. And the length of stay is as yet undetermined. They want to 'watch' him for a while, and even once he's discharged they've asked us to stay in the city, just in case. The prolonged exposure to this stress of sitting on the edge of some tipping point is really starting to wear me out. It's too easy now to imagine Ford's "failure to thrive" extending out from these months into years. It feels like he's becoming a cruel management project for a curious pediatrics team that will hold him indefinitely for observation, keeping him in this uncomfortable limbo.

And meanwhile I've quit my job and withdrawn from school. Christa's year of maternity leave is rolling into its final months. We've once again got a cat and car and a home waiting for us in Vancouver while we live out of this ridiculous theme room, eat bad hospital sandwiches, sit idly by a bed all day, lay awake all night anxiously recounting all the interactions with doctors, lab techs, and nurses, bicker and argue over our various interpretations of the latest prognosis, and watch our baby get tangled up in reams of plastic tubing and knots of love, hope, disappointment, anger, and fear.