small things

ah it is all perspective - he may look big in the photos but he is only in the 5th percentile for his age group. in november he'd managed to claw his way up to the 20th, with his sights on the 90th where he was born, but in the last couple of months has found his way back among the wee ones. HOWEVER, our wee boy, despite it all, in defiance of this stasis, and overnight, has sprouted two front teeth! teeth! wow! hopefully photographic evidence will follow soon...

two smiles

brief, but lovely, and hopefully identifiable:

"Normal" and "Classic" setting on our camera

For the past week, they've been keeping Ford on his tummy 24 hours a day, to ease the compression of his left lung. Luckily, he likes being on his tummy. For the most part.

Because of his persistent fevers, he is usually enveloped in the "Bair Hugger", a big duvet type thing that is filled with and blows cool air on him. It works best at keeping him afebrile, without needing ice or tylenol.
He does get turned over each time his "tapes" - the tape keeping endotracheal tube in place - need to be fixed.
Today they let him stay on his back for an hour where it's a lot easier for him to play with his toys!
Then back on his tummy, and back to sleep.

saturday

okay okay okay. i LOVE you readers, i LOVE that this blog is our best connection to the outside world, and i LOVE that you check the blog frequently. AND where would we be without all the love and support you send us? but when we don't write for a week, and you start emailing, texting and calling me asking that we do - i feel pressured. i know you have the kindest intentions, and i love to know that you're thinking of us in between posts, but i'm not gonna lie, nudging me for an update, well, it gets to me. we'll always write again soon, as soon as we can, time-wise, heart and mind-wise...

thus.

almost two weeks into our time at SickKids and we are getting used to how they do things here/we've been beaten into submission (depending on your perspective - ours shifts daily). we're slowly finding a few people we like and trust, though none of them doctors yet.

and for all the trouble of our first week, there was some good news. one is that Ford has been occasionally smiling. before last week, we'd never seen him smile while intubated. here they intubate through the nose instead of the mouth like in Vancouver, and that has freed his lips to more varied expression. he smacks his lips too and is able to (sort of) chew on his soother. he lost his ability to suck when he had the stroke, but he sure loves to try and remember, which is great.

we captured some video of him smiling and though it looks fine on the camera, it is indistinguishably dark on the computer. who has software to brigthen? maybe i could send you the file. RSVP.

other good news is that he doesn't have DiGeorge syndrome, which they were chasing down due to his recurrent infections.

also, results from the transplant assessment bloodwork show that he is still compatible for an ABO mismatch heart. they will test for this monthly. babies can remain compatible for up to 18 months and it means that the donor heart does not have to be of the same blood type as Ford.

the bloodwork was also to test for certain anti-bodies. since Ford has foreign tissue in him (the bit of heart tissue from an 18 year old who died in a car crash that was grafted onto his aorta during the Norwood) and has had multiple blood transfusions, he was at higher risk for having developed said anti-bodies. positive or high results wouldn't exclude from getting a heart, it would just mean more aggressive immuno-suppressants post-transplant. but with the exception of one positive result, which was low enough to be almost negligible, Ford's results were negative. which is good news too.

we're glad for the good news, and we're relieved and encouraged by the smiling, but we're also struggling. it is so hard when he is intubated. we can't pick him up or hold him and because of the pain management sedation, he spends most of his day asleep. we sit by his bed and read and wait for the few minutes he will be awake so we can smile and wave and coo before he slips back into sleep. the team here is not optimistic that he could be extubated and the thought of waiting at his bedside like this for months leaves us daunted and dodging depression. that said, they are trying to slowly wean the vent, as no breathing tube is much healthier for Ford than having it, if he can manage to breathe on his own of course.

in other news, we've been in the Ronald McDonald House for a week now gratefully not in any kind of theme room. and today, we are moving into an apartment run by the RMH. they have four in the city for their more long term families (ug) and one just became available. it will now be a subway ride instead of a short walk to the hospital, but we are looking forward to our own space.

lastly, i'd been saving this for Valentines day but then missed the occasion - Ford bled a heartshape onto his GJ dressing in january just to send you all some love in return for all the love sent:
and so and so, &c, &c.

How to play the waiting game

Nothing much has changed for us or for Ford over the last few days, so I'm taking the opportunity to flesh out some of the existing details.

Ford has remained in the CCCU since we arrived at SickKids. He is intubated, on a constant infusion of Milrinone, morphine, various diuretics, and gets frequent, regular doses of lorazepam which makes for a pretty inaccessible and dopey little baby. Since they took away his "Bair Hugger", despite how well he did while using it, he is back in a regular rhythm of fevers and is once again sporting his "Chapeau de Glace". We have suffered this latest assault on our agency and authority as "Mom and Dad" with muted resentment and depressed resignation. Although now, when fresh nurses cheerily offer us the "He's your baby so you know him best!" line, instead of smiling shyly and giving them suggestions as to what Ford needs to stay comfortable we guffaw loudly in their face, roll our eyes, and tell them to save that bullshit for the new family next door. Then we say we're sorry, tell them we were just joking, and pitch: "Ford likes it best when he's kept constantly Roc'd or Panc'd and then pumped full of Methadone and Ativan, or at least that's how we like to do it at home..." with as much caustic sarcasm as we can muster.

My routine performance as a bed-side curmudgeon was recently bolstered and encouraged by the transplant social worker, who after listening to us complain and then apologize at length about how they are dealing with Ford here and how mad it makes us, offered that no matter how badly we think we are behaving they've seen a thousand times worse - So by all means, bring it on!

The short term plan for Ford's stay in the ICU was to keep him intubate long enough to recruit his collapsed left lung, treat his acute edema, wean him off the inotropes and milrinone, and then ship him upstairs to the less stressful ward environment to wait for his heart. Maybe even get him stable enough to wait with us at RMH. But after playing aggressively and recklessly with his ventilator settings shortly after arrival, a move that we fiercely argued against (but not surprisingly were immediately told to stand-back and be quiet by the "I'm so impressive listen to my CV" doctor), Ford's lung function went into a tail-spin that has them coming to us now saying "He'll likely stay intubated (and by extension excessively sedated) for the duration of his wait". Now it's not like we know everything there is to know about lung therapy, but the plan that had been started in Vancouver was seeing results, and it wasn't at all unreasonable for us to expect Ford would be much more stable in a few weeks if we had kept on that course. But once again, all because a change in staff means a radical change in therapy, regardless of (and at times seemingly in spite of) what seems to be working, we're trending backwards instead of forwards. We've been through this too many times now to shake our heads at "the way things are done". I really resent having to sift through a mire of combative and belligerent emotions before I can sit calmly next to my son and quietly hold his hand while he sweats through a drug-induced coma.

They've performed two bronchoscopies on Ford which suggest that there might be an anatomical basis for his left lung problems, something about the pulmonary artery pressing on the lung as it pulses, which inhibits the ability for the lung to fully expand, which in addition to the lack of his left diaphragm makes it prone to the atelectasis that he's been struggling with his whole life. Additionally, they found some stubborn bacteria at the base of his lung, an entrenched insurgency holding their own since his last bout with pneumonia, that might be causing his fevers. So he is now also getting alternate doses of Piperacillin and Gentamicin. We're going to cross our fingers and hope this helps. I suppose I've been too hard on them in the preceding paragraphs, good things are still being done. The just really need to work on their bedside manners here.

The upside to all this is that while Ford remains intubated in the CCCU he is registered as a "Class 4" with Trillium which ranks him as the highest priority on "the list", excluding kids who are on ECMO or Berlin Hearts - which are in a class unto themselves (Yeah, Adelaide!).

A word about The List: It's a bit of a misnomer, which is why they are trying to change the expression from being "listed" to being "registered". More so than adults, kids come in a variety of sizes. So queuing into a list based entirely on seniority doesn't really work. If there are 5 babies registered for a transplant and one has been waiting for a year, the next 6 months, 3 months, etc, when a heart becomes available it doesn't necessarily go to the one who's been waiting the longest. Each child is put into a weight bracket and then classed by need. So if a heart suddenly becomes available that will only fit the baby who got put on the list yesterday, it goes to that child, regardless of the fact that a handful of poor suckers have been waiting a lot longer. I found myself in an awkward conversation last night with a mom here who's baby is the same age and weight as Ford and has been registered since December. But her baby is waiting with her at RMH and is as such a "Class 1". So if a heart pops up in the next week, it would likely go to Ford first.

Thinking about those things smarts a bit. We both held our cool, but it was such strange territory to wander into, to try and be rational and diplomatic when your kid's life is hinging on some other kid dying, either far away in a terribly tragic accident, or right next to you because they might suddenly not be able to wait any longer. I suppose the knee jerk reaction is to try and not think about that, but they really want us to. Part of our first meeting included an extended conversation on where the organs actually come from. Surely they are grown in a farmer's field, I suggested, next to the tomatoes, all plump and shiny and red? It wasn't the best time to joke. Another baby, the same size as Ford, needs to die and that baby's parents need to sign a sheet of paper the gives consent for a team of doctors here to immediately fly down and harvest an "appropriate amount of material" from their child. Also, we ought to expect the heart will come from the US, which in addition to having a much larger population base has a statistically greater rate of accidental death, including (Alli singled these two out for us to contemplate, so I've done it here as well) bicycle accidents and fatalities involving drunk driving. So we need to deal with that. This morning while I was making lunch the news was cycling through stories of several traffic fatalities in Ontario over the last few days and I instantly perked up. I got excited and was consciously feeling for the phone in my pocket to start buzzing with "the call". But of course it didn't, and I left and ate my lunch and was saying to myself: You thought you were going crazy before. You're completely psychotic now. All I can imagine doing in that instant is collapsing into an effervescent heap, a useless lump of stinking, steaming emotion all mixing above me in sloppy confused cloud.

So Ford is stuck in the familiar but poorly termed middle-ground, uncomfortably wedged between the best case scenario (being ranked highest in terms of need), and the worst case scenario (waiting in the ICU on a variety of life-support systems). His IV lines, which he needs to supply him with the cocktail of drugs necessary to keep him intubated put him at serious risk for infection (which we've seen now several times) as well as for clotting (which we've also seen now several times), which both put him at serious risk for acute episodes of death (not to be too dramatic). He is also being exposed to the hospitals catch-22, the barrage of unusual bacteria and viruses that are exclusively concentrated within it's confines. He has already been infected with CMV, one of two viruses that pose specific and significant risks to recipients of organ transplantation (the other being EBV, or Mono, which causes a cute little post-transplant complication called PTLD , a nasty cancer). So the longer Ford has to wait in the CCCU the more uncontrollable our fears become that he will get too sick to make it, regardless of how much quicker he might get his new heart.

I hope this all helps to explain the increasing number of blogs that begin with angry rants about brutish staff making changes to Ford that seem to put him in a worse place. I'm going nuts learning how to play this game.

Also, 3 cheers for Wikipedia for supplying me with easy links to complicated words. Don't kid yourself on the quality of the information contained therein, Wikipedia registers a hit every time a doctor consults an iPhone before answering a question.

0.00002%

I'm no good with numbers. In fact I'm stunningly inept when it comes to math. But after our last few days of meetings, going through the ins and outs of heart transplantation, I've got a lot of numbers all jumbling around in my head and I thought this morning that I would try to make sense of a few of them.

It all started with our first meeting with Alli, the transplant nurse, who will be our primary liaison between all the various doctors and departments that are going to get involved in this thing. She says we're going to hear a lot of different things from a lot of different people and until we run it past her we're not to believe any of it. Nice to think there could be a stable core at the centre of all this madness.

The first question she asked us was: How many transplants do you think we do here at SickKids in a year?

We have no idea... 3000? 1000? 400? 100?

The average is 20. And apparently SickKids is a leading centre in the world for this kind of surgery, with the staff here producing much of the research that has helped advance the field in the last 15 years. Worldwide there are only about 450 pediatric (birth to 18yrs) heart transplants done each year. Which I think, after taking a quick stroll through a wikipedia entry of the current world population estimates, is about 0.00002% of all the kids alive right now. I haven't tried, but if I were to start adding into the mix all the strange, unexpected, and rare events that Ford has suffered through in the last 9 months, beginning initially with the rarest of the rare, the diagnosis of HLHS, I imagine I'd just hit a wall of static and start craving steak.

But while I might not be very good at understanding numbers, I remember someone who is! And I tracked down a quote that comes from one of my favourite books, For the Time Being:

Is it important if you have yet died your death, or I? Your father? Your child? It is only a matter of time, after all. Why do we find it so supremely pertinent, during any moment of any century on earth, which among us is topsides? Why do we concern ourselves over which side of the membrane of topsoil our feet poke?

“A single death is a tragedy, a million is a statistic.” Joseph Stalin, that connoisseur, gave words to this disquieting and possibly universal sentiment.

How can an individual count? Do we individuals count only to us other suckers, who love and grieve like elephants, bless their hearts? Of Allah, the Koran says, “Not so much as the weight of an ant in earth or heaven escapes from the Lord.” That is touching, that Allah, God, and their ilk care when one ant dismembers another, or note when a sparrow falls, but I strain to see the use of it.

Ten years ago we thought there were two galaxies for each of us alive. Lately, since we loosed the Hubble Space Telescope, we have revised our figures. There are nine galaxies for each of us. Each galaxy harbors an average of 100 billion suns. In our galaxy, the Milky Way, there are sixty-nine suns for each person alive. The Hubble shows, says a report, that the universe “is at least 15 billion years old.” Two galaxies, nine galaxies… sixty-nine suns, 100 billion suns –

These astronomers are nickel-and-diming us to death.

It's hard sometimes, as we swing wildly between the infinitely large and unimaginable, and the infinitesimally small and imperceptible, to remember that there is a little baby lying in the middle of all this (although i think Christa has an easier time with that than I do). And regardless of what's going on at a molecular level in his blood, or how close we are to having his heart replaced, he still wiggles when we rub his feet and smacks his lips and stares up at us while we sing to him.

So we'll cheer on the accumulation of 'point zeros' as they pile up in front of his statistical insignificance because we know that they correlate exactly to an exponential increase in the desperate measures taken to preserve his preciousness.

So. All that aside, how is Ford doing?

Ford is ok. We have been putting up a big fight this time around to have his day to day management tailored to the way we got used to things back in Vancouver, to the way that we have found he is most comfortable. It peaked two days ago with another angry bout of arguing and shouting, four of us around his bed, while poor Ford writhed and sweated in feverish distress. This time though, after tersely listing her CV for us to step back in awe of, and me rolling my eyes and demanding they stop patronizing us, and Christa crying, and the nurse's hands trembling uncomfortably throughout the argument, the fellow relented and allowed Ford to be rolled on his belly and went to get him the gentle cooling fan that we wanted them to use instead of paralytics and bags of ice, and we have seen no more sudden spikes in his fever or prolonged periods of discomfort.

There is a lot to relate regarding the impending operation, the recovery, Ford's new life, and all the potential complications that could get in the way of things between now and then, but it's still settling into us and is hard to concisely sum up here. It will undoubtedly make it's way out over the next few days, but for the moment everything's still a go. Could be a day, could be a year... more wait and see.

The Trip to Toronto

Ford after being transferred from his bed at the ICU in Vancouver to the stretcher for his trip. Can you see him? He's there.



Arriving at YVR, excited to check out the plane... umm, it's quite a bit smaller than the ambulance... are you sure we're going to be able to pack 5 large guys and a baby inside?



No... But we're gonna try. Babies first.



Me next - in the back corner behind the baby, then everybody else. A slow and creeping panic consumes me as they shut the door and start the engines. I'm stuck with no room to move in the smallest space I've ever stuffed myself into, accompanied by 5 strangers and a really sick baby.




Still, once I got over the panic (the complimentary yellow cases behind our seat really helped us all - well me and Ford at least - stuffed as they were with every sedative known to mankind) it was unarguably the most comfortable flight I've ever had. Riding in a Learjet means riding in style, even if it's cramped and stuffy - note the brass and wood veneer accents in the previous photo. This particular plane was reportedly owned by Imelda Marcos, first lady to the late Philippine dictator Ferdinand Marcos, before servicing BC as an air ambulance... not sure where she would have put all those shoes. I wish the plane had absorbed her moniker: Steel Butterfly, but sadly no...


After waiting idly on the runway in Toronto for a few minutes - the following conversation:
Where the hell are they? Wait, did you call them to let them know we were coming? Umm, yeah, they're supposed to be here. Ok. Well, they're not. I'm going to call Vancouver. Hello? Isn't there supposed to be an ambulance here to meet us? They weren't dispatched? Well, could you please call them and let them know we're waiting on the plane here and we all really need to pee! - 15 minutes later the ambulance arrives and we wrestle our way out the door.
Babies last!


Getting into the ambulance from the plane. Thrilling ride from YYZ to SickKids. Allow me a brief public service announcement: Please do whatever you can to get out of the way of the ambulance that's wailing and barreling down on you from behind, even if you are an aggressive, jaded rush-hour commuter in Canada's largest city. Where do all these people come from?



Still, we made it to the hospital before the batteries died on this mess of equipment that keeps Ford eating, breathing, sleeping, and living. Quite a mess of wires - oh those carefree days of our youth.


Gentle Paramedic.


Ford is stable in the CCCU and we are comfortably checked-in at the Delta Chelsea hotel a block away. Ford is on the waitlist for a new heart and we are on the waitlist for a room at the Ronald McDonald House. While the transfer was far from problem free, and we are currently in the thick of asserting ourselves here as the only people qualified to manage the continuity of care that Ford needs to stay comfortable and well - we have already had a few breakdowns and heated arguments with doctors - we are trying to remain calm and optimistic.

Tomorrow is slated to be full of several hours of briefings and evaluations, prepping us for the realities of transplantation, including a psychosocial consult that attempts to determine if we are sane enough, strong enough, and socially relevant enough (I'm serious) to qualify as a family that deserves something as valuable and as hard to get as another dying baby's healthy heart.

While I ought to be sorting out a haircut and and a shave, to boost the appearance that I'm a useful member of society, I'm lounging over a beer in the Chelsea's bar waiting to meet Christa for dinner. More often than not I find myself pulling at my hair wondering what the heck we've gotten ourselves into...

Bon chance Ford... Bon chance.

Transplant Take Two

It's a go for 6:00am - the Infant Transport Team is slated to start the transfer process of Ford and all his equipment from bed to isolette, to ambulance, to air ambulance, to ambulance, to SickKids.

This time I get the pleasure of riding in the Infanta's Lear jet while Christa slums along behind us on Air Canada.

We have had another whirlwind few days. Even though we've been back in town for a couple of weeks now we didn't really get much lead time on this latest adventure. Our horrible first week knocked the socks off us both and we had been hiding in a sulky, shell-shocked gloom until the impending departure kicked us in the ass. We've had a chance to visit with close family and friends, who have once again shown us a stunning amount of compassion and generosity - our spirits have been recharged, and buoyed, and hope-filled and we're ready to haul our exhausted butts out of bed in just under 5 hours.

Assuming once again that this is the real deal, we're planning to be gone for months - 3-6 to be exact, which includes not only the wait time for a heart but the requisite post-op recovery and period of observation. I spent the last 3 days destroying the art I spent the last year and a half building before emptying my studio at school and bidding it an unsentimental farewell. We've shuffled our living space to make room for the sitters, cleaned to the best of our ability, cancelled our car insurance, patted the cat goodbye, and hopefully have all our loose ends tied off.

Though we're sad to be leaving Vancouver, we're really most sad to be leaving all of the nurses and doctors who've gotten to know Ford so well. Hopefully when we return our city will be less an inaccessible, militarized fortress for the world's super-rich and more the sleepy damp village we love so much.

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!

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.