Back and Forth

Ford has had a stable few days since they put the stent in his jugular and ensured, at least temporarily, that he could get blood flow out of his head. Phew. The ventilator is helping to keep his lungs open but the persistently stubborn lower left lobe is still collapsed. They want to be sure they can open it up before they think of extubating him again and we're hoping it will
only take a few more days. Since the best way for them to combat his sagging blood pressures is to bolus him with IV fluids and blood he's become quite fluid positive and is looking extremely puffy and swollen. But, the overload of fluid is equally bad for his heart so they are putting him back on a constant infusion of IV diuretics to try and dry him out. Back and forth and back and forth we go.

They managed to wean him off of the epinephrine last night, which is extremely good news as they were really not sure why he seemed to need it for so long in the first place (It was put on as an emergency kick to save him from imminent heart failure a few days ago and they were unable to turn it off without seeing an immediate drop in his blood pressure). The imaging of his heart function since coming back from Toronto is generally quite improved from December and they seem happy with where that's at.

So. Where do we get to go from here?

The weekends are a bit black-hole-ish around here and so the short answer is: we're not sure. Tomorrow will probably be a big day of discussion as Monday is Cardiology rounds and they've no doubt spent the weekend wracking their brains for a plan (and hopefully having more prophetic dreams, too). But, we do know that Dr. Human is eager to talk with Dr. Dipchand (who has fittingly gone on vacation) presumably to reassess Ford's transplant candidacy. And here's the rub that's sort of at the heart of our seemingly wasted 6 weeks out east:

The Vancouver team, who've had the pleasure of seeing Ford come and go from the Icu over the last 6 months, know that he is uber fragile, prone to sickness and unusual complications that are unduly compromising his chances at recovering and thriving the way other kids with his condition do. They are at a point in their thinking where it seems unlikely that Ford is going to out-grow his disadvantages (feeding, weight-gain, breathing, etc), which is a course of treatment that a lot of kids are put on - the wait and see plan.

They feel like we need to do something big to help Ford or he's just going to remain in this fragile place being hit hard by complications that slowly wear him down. But the problem we ran into in Toronto was that from their perspective Ford's heart function was too good to warrant transplant. Case closed. And so they sent us packing and two days later we wound up back in the ICU with Ford on death's door and everyone here slapping their foreheads in frustration.

Toronto says Ford's heart isn't sick enough to need replacement and that we need to deal with his other issues as other issues, case by case, until he eventually catches a break and grows strong enough to weather them without the need for dramatic intervention. But Vancouver is saying Ford's 'other issues' are being directly and indirectly caused and exacerbated by his struggling heart and the longer he stays like this the worse off his chances are of ever catching said break.

It's also worth keeping in mind that a transplant isn't a miraculous cure that will suddenly end all of Ford's problems. We'll just be trading in one set of issues for another and from that perspective we'll be no better off. We are once again caught between a rock and a hard place.