A day of days

It seems the better we get at handling their curve balls the more they start throwing at us.

Today started with an 11:30 meeting with Dr. Human to resolve the events of the last two weeks into the bigger picture that is "Ford" and then project it into the future. By the time I got to the hospital to join Christa I was shaking with anxiety, thinking this was the conversation where we'd be told that they'd exhausted all the options, that Ford wasn't a candidate for transplant and clearly wasn't going to get well on his own, so we would have to suck it up and let him go. Crazy, I know!? Lately, I'm getting crazy.

But it wasn't like that at all.

In a nutshell he admitted that there was a frustrating loss of communication between the team here and the team in Toronto and that we had wound up with Ford being in roughly the same position now as he had been back in December. The good news was that, having temporarily resolved the clotting issues, he was in no worse shape as when we left. The bad news was that we had lost 2 months of precious wait-list time for those hard-to-get organs of infants (there is probably a more elegant way to phrase that, but I've got a hankering for my youthful days as a crass and tasteless metal-head).

So we talked options.

Edmonton also has a great cardiac facility, and is most recently the go-to centre for western Canada (re: our earliest blogs). Statistically they have the same success rate with transplant recipients as Toronto, their surgeons all trained and worked at SickKids, and they also have experience working with Ford. Another big plus is that, once assessed and listed, Ford could be transferred back to Vancouver for the unpredictable and often long wait. The thought of being able to live at home with our baby (given that he remains stable) was enough to have us reassess the reassessment.

All eyes were on Edmonton.

Dr. Human said that he would bring Ford up at their weekly teleconference on Wednesday, where Vancouver and Edmonton gossip and talk shop, and then get back to us on Thursday with the transfer plan.

The big downside to all this was that he would not be automatically listed, that Edmonton would need to do their own work up and assessment of Ford and decide for themselves (with Vancouver's backing) to list him. Dr. Human emphasized that this last round of 'up and down' cemented his conviction that Ford is only going to get better if he can get a new heart and would be extra-adamant with the Edmonton team that this was his only option (temporary, spontaneous, inexplicable recoveries aside - although I imagine Edmonton's air quality is worse than Vancouver's and Toronto's combined, being ringed as it is with oil and gas refineries). So we all agreed, the meeting adjourned, and we settled into visions of Lear-jetting away from tropical Vancouver (which seems to have suddenly jumped down to the southern hemisphere) for the endless Edmonton winter.

Then came a series of respective meetings with a clinical cardiac nurse, the transplant social worker, the ICU social worker, and, uhh... a team of maudlin and voyeuristic Costco executives rounding with a camera and a hunger for each family's tragic tale - Kirkland Signature bulk trauma, if you will (which instead of politely declining prompted me to put on my best performance yet), where the topic of conversation was primarily: how do we handle issues of broken trust and loss of faith in doctors, divergent opinions on matters of life-and-death, how one makes clear, confident decisions while being battered to a pulp at the centre of a class 5 hurricane and, can I really get 100 chicken breasts from you guys for only 5.99? How do I sign up?

But then, heads still spinning, Dr. Human returned (not 3 hours later) to deliver this little bombshell:

I just got off the phone with Anne in Toronto, she admits they made a serious mistake in sending Ford back, and they've agreed to take him again. You could be on a list for a new heart tomorrow. We'll send you there (on an air ambulance, not a commercial flight) as soon as you decide whether you want to go.

Uhh... Umm...

Ok?

And then the social worker chimes in:

This is great! Now that they've admitted they made a mistake they'll treat you like royalty!

We think in the end, if we put our past grudges aside, that getting Ford onto the list asap is the best thing for him. They're having trouble weaning him off of his ventilation right now and he's only intermittently coming off the inotropes, so we aren't really gaining an advantage in waiting. Sure, we might end up having a better working relationship with the folks in Edmonton but we also might end up going there for 6 weeks and returning with another rejected application and ailing child.

Feeling like we don't really have the opportunity to linger and weigh the pros and cons, we're just going to jump on the plane and go.

Once again we've got to leave at the drop of a hat. We literally just finished unpacking a few days ago and we're scrambling to do it all over again. To clean and pack and find someone who can feed our cat and water our plants...

then off we go again!