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.