The Hospital for Sick Children

We've all arrived safely in Toronto and the transition has been thus far relatively easy. Perhaps we are just becoming old hats at navigating ICUs, this being our 5th (2 NICUs & 3 PICUs - although this one is technically called a CCCU, or Cardiac Critical Care Unit).

I have made the decision to go with the flow around here and not behave like a petulant child who's been handed off to a new babysitter, obstinately stamping my feet as they explain the new rules and make all their minor changes to Ford. The afternoon of our arrival was certainly vertiginous. Things are never as clear as it seems they should be, despite boxes full of volumes of progress notes and test results (which had to be couriered separately as they would likely not have fit onto the cramped air ambulance), an in-person hand-off by one of Ford's Vancouver cardiologists to the Toronto team, not to mention the constant vigilant presence of Christa and I (honourary, self-appointed cardio-neuro-hemo-gastro-intensive-nursing specialists, aka Ford's primary care-givers), who no doubt unintentionally added a few wrenches into the whole transfer process, armed as we are with our dangerously incomplete vocabulary of over-specialized medical jargon and patchy understanding of human anatomy - The hip bone's connected to the... superior bi-directional cavopulmonary shunt?

Still, Ford was very quickly resting comfortably and there have been no mentionable medical events since. We are in a holding pattern, waiting for the judgements of Monday when the new team will meet, having already gathered a large amount of information for themselves, on top of finally having the chance to work through Ford's complex history, and present us with their plan of action.

While their initial plan will likely be: We need to do more tests, we'll get back to you next week, we are still a little anxious about what to expect. After going through his previous MRIs Neurology came by to examine Ford (who has actually suddenly started moving his right arm and using his right hand again!), and they seemed confident that he'll "be throwing a baseball in no time." Which was encouraging news. We've also had visits from Hematology, Infectious Disease, and Cardiology. Ford's new primary cardiologist, Anne Dipchand, who specializes in high-risk heart transplants, spent some time talking to us about what we'd been told and what we expected from them. It's always a little unnerving when doctors ask you that, but it was really just a way for her to say that despite Vancouver's insistence that there is "nothing more we can do," they are going to take things a little slower and try to come to their own conclusions. She was concerned about Ford's persistent fevers, his history of infection, the active CMV he's being treated for, all of which are (or could be) compromising his heart function and skewing the picture of how sick he really is. It is a hopeful prospect, despite understanding that it means more sitting around and waiting without really knowing what to expect. To be fair to Dr. Human, they did also send us out here with the thought that they were just missing or overlooking some crucial piece of the-puzzle-that-is-Ford, hoping a new perspective might be all he needs.

That's about the gist of it right now. We've had a great time catching up with all our friends in Toronto, who've been amazingly generous with space, time, and empathy. We've got a room in the Ronald Mcdonald House (which is a story unto itself) that is a short walk from the hospital, and are hoping to hunker down and enjoy what we can of the winter here.