The surgery itself will be simple. Poke a hole, insert the tube, throw in a stitch. The hard part will be Owen’s body adjusting to the tube, likely causing irritation and possible infection. I will also need training in feeding. So 2-3 days in the hospital to adjust. Three times now I have packed an overnight bag.

“Owen?” The orderly has a clipboard and is reading from a list.

That’s us! Over here! I start to gather our things.

“There’s a bit of a delay. We’re going to move you to second on the list. We’re looking for your file.”

His ‘file’ is 6 inches thick contained in two separate folders, held with a big rubber band. How does something like that go missing?

“We only have the request form. The anesthesiologist wants to see the whole file.”

I look at the clock. 9:20 am. We’ve been here since 6:30. I guess we can wait a bit longer.

________________________

10:50. Another orderly with a clipboard enters.

Finally! I look around for my bag as I pull the wheelchair closer to me with my foot. Owen has fallen asleep on my lap and it is hard to move.

He looks around the room. “Alex? Is Alex here?”

Who? No, his name is Owen…

“Sorry, we’re still moving down the list. No file yet. We’ll let you know.”

________________________

With Sallyanne, waiting again. Different procedure, 6 years later.

I’m getting really hungry – and poor Owen! No food or water since last night. This was all supposed to be finished by now. I would have already had a helping from the salad bar and a second tall mild from Starbucks. It’s almost 1…

“Owen’s mom?” Why do they never bother to find out my name?

I know this game by now. I don’t get up or fumble around. I barely look up from my magazine, but I raise my hand.

“Here.”

A man in scrubs picks his way through the legs, strollers and toys. It’s the surgeon. This can’t be good.

“The physician who ordered the g-tube procedure signed out your son’s file and may have left it in his office. Unfortunately, he’s not reachable. The anesthesiologist won’t give Owen the general anesthetic without a full history. We will have to reschedule.”

I close my eyes. This can’t be happening. We have been waiting for this for weeks and now we’re BOTH hungry.

Breathe. Open eyes. “Can I sign a waiver? Nothing bad will happen. I promise. He’s been under before. ”

I know it doesn’t work like that. But I will say anything.

“The only other option is to do the surgery without the anesthetic. Might be safer in the long run anyway. We can freeze the skin. But he will feel the incision through the muscle and his stomach wall.”

My mind is agile, I can course-correct on a dime, I am grace under pressure, I am completely unflappable. But this doesn’t compute. Surgery while conscious? I become dramatic, imagining a knife carving into the belly. He won’t have me for support. He can’t hear what’s going on. He doesn’t even know that he’s going in for surgery. They will have to hold him down. I’m mad he even suggested it.

“Absolutely not!”

The emotions are frothy and bubbling and taking up space and demanding attention, yet a quiet voice of reason and detached observation seeks to be heard from the depths. Something is dawning on me as my primal brain wants to fight and run at the same time.

I’ve been here before. HE’s been here before. We’ve both been poked with a sharp straw without pain relief or sleeping minds. It wasn’t that bad, was it? And we survived. The upside of Owen is he doesn’t anticipate, doesn’t rehearse. It will be over quickly. All this waiting will be over and we will move on and Owen will finally get enough food.

What’s at stake?

“Wait…”

The doctor, his message delivered and his body halfway out of his seat, pauses mid-air then slowly sits back down. He looks at me expectantly.

“I mean yes. Just do it. Please tell them to do it quickly.”

When one has a complex or mysterious problem,  the path of referral goes something like this:  see a generalist, get referred to a specialist who knows the condition, get further referred to a sub-specialist who does the procedure for that condition.  The scope gets more and more narrow, like a funnel.

I think many patients, and parents of young patients, see this as a journey down a single, inevitable path leading to the grand conclusion.  Not as a complex maze that could shoot an unwitting participant down a dark tunnel that lands herself in one of many possible chambers.  Viewed through a wider lens, which chamber you end up in can seem almost random.  Depends on who you saw last.  What they knew.  What they read.  Whom you’ve met so far.  Whether or not you liked the last doctor.

Uberspecialists, like the one guy who does the one procedure for the rarest of conditions, are like special interest groups.  They have their own funding, their own agendas, their own perspectives.  Like all good scientists and researchers and engineers, they are simply trying to prove a thesis.   To support an idea that has possibly been years, decades, in the making.  They are looking to see if your case fits with what they have to offer.  They are assessing to see if you are a good candidate and whether or not you will be deemed a successful outcome.  In other words, do you fit their profile?

Here’s the problem:  If you do fit the profile, it’s natural to assume that whatever they’re offering is the right solution.   Finer minds than yours and mine have spent a lot of time and money to figure out this one thing.  And the specialist doesn’t have the time or inclination or even perspective to state his or her special interest.  This path of referral can take many months, and sometimes years – the legitimacy of the path itself is not called into question at that point.  The specialist assumes you’re pre-qualified enough and you, the patient or parent, is just happy to talk to someone who finally knows what you’re going through.

I remember the moment I clued in to this.  The neurologist was looking Owen up and down, thinking out loud.  She recited a high-level checklist, crossing them off one by one.  Fixed postures?  No.  Is he big enough?  Yes.  Parents understand the surgical risks?  Yes.  Then, as I relayed in my last post, she said something like, “Well then.  There’s no reason not to.”  Hm, I thought.  That has a ring that’s not sounding quite right.

(This experience reminds me of the process around discovering Owen’s deafness.   He was diagnosed at Sick Kids, around 1999-2000.  Not sure what they do now but back then, when hearing fell out of a particular decibel range, children were referred immediately to the H.E.A.R. program.    Hearing Evaluation And Rehabilitation.   Also known as the cochlear implant program.  No other options were presented; Owen was put on the list and we started the assessments.  When I inquired about other options, they said there were none – they of course meant that there were no other interventions that would restore or simulate hearing, and they were right.  But I could easily have taken  that to mean ‘this course of action is the only reasonable thing to do’. )

No reason not to.   From her perspective, the doctor was absolutely right.   And now it’s up to me to figure out what else is right, and also good.

I was looking forward to exploring the possibilities and finding out more – and hoping to rule it out, or rule it in.  I came away from the appointment deeply disappointed – not in the doctors, not in the surgery, not in myself.  Just bummed in general.  Despite my resistance to another potentially useless surgically-implanted device, in the brain no less!, I was committed to continuing the dialogue until a decision had to be made.  I was anticipating the moment when all that research would turn into an obvious answer.  No such luck.

Hell's Kitchen Flea Market, NYC - has nothing to do with this post.

Only a handful of children in Canada have had the procedure done, and only a few of them have had the device implanted long enough to report any results – most with no to minimal improvement (of kids similar to Owen). Interestingly, the neurologists cited official-sounding statistics, like “1-2% will experience a stroke during the procedure due to burst blood vessels”.  1-2%?  Based on a sample of less than 10?  I asked for clarification.  The number was extrapolated from the adult population and applied to what they know about children’s brains.  Fair enough.  But to me, that explanation rendered the numbers virtually meaningless.

We discussed the ins and outs, the pros and cons, the ups and downs.  Random quotes:  “Maybe it will help.  Maybe not.” “May provide some pain relief.  Maybe not.”  “May cause tingles or additional posturing.  Maybe not.”  “Probably can’t hurt.  Maybe.”  “If you’ve tried everything else, I can’t see a reason not to try.”  “As far as brain surgery goes, this is pretty low risk.”  “No, we won’t take it out if it doesn’t work.  But it might be worth a try.”  “Why not?”

I guess that saying is applicable here:  when all you have is a hammer, everything looks like a nail.  Might as well give it a whack.

Thanks, but no thanks.

One of my favourite shots of Angus. Owen did not come on this trip.

As Owen gets bigger and more wiggly I can sense the forthcoming horrific decisions that are coming my way.  He is not that heavy yet (48 lbs) nor is he that tall (drat, I forget…  he’s short) but consider his size when he’s doing his best imitation of a greased seal and you’ll perhaps appreciate how difficult it can be to manage him.

Owen has virtually no control of his movements due to the unhappy combination of dystonia and spasticity.  Often, he extends through his whole body so powerfully he gets deep marks in his thighs and shoulders from his wheelchair’s lapbelt and chest straps.  When he can’t sit comfortably (which is a lot of the time), he must be released from his binds and laid on the floor.  Because of the lack of support there he writhes, twists and contorts himself into impossible pretzel shapes and must be rescued from himself.  The pressure in his stomach is so strong he pushes up his food and chokes/sputters every time he lies down.  And so then, the only option left is to be held in someone’s lap/arms, supported in a way that provides nothing less than a full-body restraint, using chin, hands, feet, thighs, knees to restrict the movement of a wayward flailing arm, flopping head and extended and rotated leg.  He thrusts, twists, flops and lunges in quick succession, sometimes, incomprehensibly, all at the same time.  I’m exhausted just thinking about it, even as I hear him snoring now in his bed.

While Owen’s condition is not degenerative, it is certainly progressive – meaning, he’s getting harder to manage.  I see that we can’t keep this up.  Not me, his dad, his caregivers, probably not even Owen.  Not like this.

We met with Owen’s neurologist earlier this week, to review meds and talk about next steps.  Again, the only tools in her toolbox are increasing meds and considering DBS – deep brain stimulation.  Increasing meds was an easy sell in the moment, but for a number of reasons it’s no long-term solution.  And so, what of DBS?

To date my reactions to the procedure have been, well, reactive.  Icky scar on the head, invasive battery implanted under the collar bone, scary probe in the brain…  Sounds all science-fictionlike and creepy.  But when I take a step back, I can ask What about heart pacemakers?  Artificial limbs?  What about cochlear implants?  These were all met with skepticism (by some) but are fully embraced today.  This DBS technology will be standard in 10 years. Maybe 5.  Perhaps I will feel foolish for being so resistant now.  Owen would not be alive today were it not for technology.  And anyway is DBS any more invasive than all those medications we give him several times a day, which by the way do little for his symptoms but in some cases create other problems?

I have decided to face my demons and learn more.  It’s only information (I tell myself).   No good decisions were ever based on fear and ignorance.  I am going to get the referral, meet the neurosurgeon and ask the important questions.

Someone has to do it.

It wasn’t actually a fraught decision;  I have always known my own limits for what interventions for Owen are acceptable and what are not.  The standard form for DNR (in Ontario, anyway) includes a list of actions that paramedics are legally excused from performing, including administering certain medications, chest compressions and artificial ventilation.

After thinking about it for a long while, I settled on an acceptable (customized) list and had Owen’s physician sign it.  She, and Owen’s dad, agreed with my decisions.

I then showed the form to all of our caregivers (actually, one more left…) and anyone else who figures into our everyday lives.  I made clear my intentions, my decision and my rationale and was open to discussing any reactions.  Everyone said they are supportive and some seemed relieved that a plan had been communicated.

This post is not about the details of the DNR or even whether or not I think you should sign one.  It’s a deeply personal matter and one about which I have no judgement.  Rather, I encourage you to think about how you would want an emergency handled.  Decide what you must and then inform anyone who needs to know.

For me, the details of the DNR were decided strictly on the basis of Owen’s likelihood to survive the intervention and what his life might look like afterwards.  However, the decision to contemplate it at all and finally get it in place was motivated (in part) by a completely different set of factors.

I currently employ 5 caregivers who collectively work approx. 50 hours a week.  The chances of an emergency happening during that time are not negligible.  I feel it is my responsibility to share with them the ‘master plan’, to not only help them to know what to do, but also to relieve them of the terrible burden of powerlessness and potential regret.

I am quite certain they feel the fragility of Owen’s life and it possibly crosses their minds more than occasionally that one day Owen may not be around to care for.   If any one of them are so unlucky as to face a potentially fatal emergency with Owen, I would want them to remain present enough to support Owen and not have to fret about decisions and interventions.  Because I have made decisions in advance, I can give my full trust and support to these fine young women.  For the amount of responsibility they shoulder every time they arrive for work, it’s the least I can offer them in return.