Below, the Eldest is practicing his infusions on a doll who can demonstrate to children a port-a-cath, PICC line, or venous access. When needles abound, I say, make sure everybody gets to play, hmm?
The Eldest hobbled gingerly off to school today, and I watched him go with some misgivings. Swelling had not reduced much, and he had trouble getting his snowboot on this morning. Should he walk on the foot formerly known as OozeN'Swell? Could he?
The hematologist in charge - the head coagulation guy at the local shop, to be precise, a role that puts him slightly lower than the archangels, but high enough to have slings and arrows fall short - said activity as tolerated. Cranky from a series of lousy communications, I decided to take him up on it. If he was wrong, then I'd have another arrow in my quiver to use (or just rattle) against him. Not that I'd ever use it.
It's easy to paint our situation as an 'us vs. them' sort of thing. Brave mama vs the foolish doctors is a much stronger picture, a much more psychologically maintainable picture than mama and boy taking the punches thrown by life with diagnosis. It's not the hematology fellow's fault that she doesn't understand how to dose the Eldest - he's a rare duck and doesn't fit the dosing protocols that she has. And it's not her fault that the Man is nervous about trusting our experience, or fears that without official MD sign-off on treatment for each bleed, our insurance will some day yank coverage from out underneath our feet. Her problem is that she should be omniscient, able to interpret an apparently tricky bleed in a distinctly tricky kid, when the parents are edging away from doing it themselves. And even the head coag man can't do it via email, despite my precise descriptions. In the end, it's a partnership - and a necessarily flawed one.
Getting to blame medical-type folks for the Eldest's pain, irritation or my own frustration is just a bonus that came with the diagnosis. Someday, it will only be justice served if I grow up and decide to be a doc myself. Then folks can blame me.
By the end of school today, the Eldest had been in a snowball fight (a good sign - boys in trouble are healthy-ish) and been beaned by an iceball, thrown by a bigger kid (whoops). His ear was reddened, his spirits lifted...and his foot hurt. Normal life had been too much, too soon - and had I not been caught up in a wave of righteous indignation, I'd have made the call myself and kept him off his feet for another day.
I've been having a small exchange with one of my favorite ob/gyns about how people use their medical resources. A thoughtful, lovely doctor, she's spent time considering her patients. Do they want to be faced with a grumpy mama hen, who is going to chew them out? Or do they want a teammate, learning alongside them? I suspect she switches gears gracefully. But she's only half of the equation.
I've just finished rereading Atul Gawande's book, Complications. It's a fine, fine book and a fascinating one. In it, Gawande talks a bit about the challenges of medical decision-making. Specifically, the ethics of handing the power to make medical decisions to the patient. Do they want that power? Are they able to understand the choices they make? Are they able to make the choice that will best serve their own desires?
Tonight, when I pulled out another 750 units for the Eldest (his second such dose today), I looked at the tangible price of our teamwork. It's a flawed team, but I'm coming to see that my slide from frustrated advocacy to (okay, passive-aggressive) contention hasn't helped us. Exhausted, late night conversations with the Man have laid the groundwork for change here at home, and we're developing an incident report system to help us track incidents, treatment and ultimately push change in the Eldest's care. But what we really need here is a clarification of our own desires: what do we want, the best-tailored care for our child, or to avoid taking more responsibility for it?
As parents who do the IV pokes, who analyze and report bleeds, log incidents and track treatments, bleeding patterns, we have a lot of knowledge, and a lot of responsibility. Our HTC offers us more, and is willing to let us be independant enough to treat typical bleeds on our own, calling in only for support or if a bleed fails to respond to treatment that's worked in the past. They'd check in with us annually, or more often if we need too many refills on our prescription.
Independance with backup, less drama, controversy and more day-to-day living. And exquisitely tailored care, thanks to a shift in the structure of our medical team, moving a good deal of the power from the them with their targets painted on, to us. My brother likes to point out that I don't want to be part of a medical team, I just want to have the doctors agree with me. He might be right, and that's a little humbling in the hubris implied. But we could neutralize me, we could stop bullying, resenting and arguing, and just take the responsibility we're being offered.
Do we want to? I do (though I'm a little scared), but does the Man?
5 comments:
good question...perhaps involving him more might help not only his confidence in himself, but in your knowledge too. i mean, it's not like you've been totally on the sidelines letting other people deal with things all the time. you have brains and you use them. you know your son and you know his illness and how it affects him. perhaps adding to that listing of incidents, treatments, etc. list times when you disagree with the porofessionals and see who's turned out to be right.
but also remember to consider the source. i've never had to cope with a chronic illness in a my own child (unless you count sloth).
dw, I've been thinking about your comment. I think there's a few things holding the Man back. First and foremost is insurance - he wants someone else to be responsible for our use of the expensive meds. Second is that he doesn't have a lot of faith in the training methods used by the HTC. From his perspective, we treat without good evidence that treatment is necessary (see above comment re: expensive meds and insurance). There may be other things holding him back, but I suspect that's primary.
Does he need confidence? Yep. We talk over each decision, so he has some idea as to what happens, and is involved in each decision. But he has no faith in society's willingness to continue supporting our child's medication, or in politics' ability to fix the healthcare system's spiralling costs. And that's where we get stuck.
After all, I don't have faith in politics' ability to fix this, either.
Have you ever heard of Camp Honor (Hemophiliacs overcoming new obstacles resourcefully?) I was a counselor there...we taught the kids how to infuse and the like. It was fabulous!
Hmm. Hadn't heard of Camp Honor - although I'm familiar with some of the other camps. We do have some experience with Hole in the Wall Gang Camp, and I have a lot of confidence in them.
I'm really looking forward to sending the Eldest there when the time comes. And, as it happens, the Toddles - HiTWGC has a sibling session.
Hmm. Hadn't heard of Camp Honor - although I'm familiar with some of the other camps. We do have some experience with Hole in the Wall Gang Camp, and I have a lot of confidence in them.
I'm really looking forward to sending the Eldest there when the time comes. And, as it happens, the Toddles - HiTWGC has a sibling session.
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