Twice this procedure has been rescheduled. Which was extra disappointing because once I decided to move ahead I was focused and eager. This time, so far so good. We are in the waiting room as instructed – gown and booties on, fasting since last night. Owen is first on the list for the day’s surgeries – a new life awaits!
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.
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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.”
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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.”
wow.
Reminds me of some story Ian Brown told and about many others.
Why does this happen?
Its like not doing your homework. Why do these guys always get to show up unprepared?
I now say ‘Call me when you are ready’, but they never call…..
I could hardly read this because it upset me so much. I remember sitting in an education session where they showed us the device they use to “puncture” a child’s stomach to put the g-tube in (before Ben had his).
Our g-tube operation was cancelled three times — the last time as we sat across from the operating room and everyone waited for us around the table. That time I refused to leave until he had his operation.
The missing medical history is unacceptable. But to put you in a position where you had to choose the surgery without anesthetic? That makes my blood boil.
What if Owen had been a “typical” child who was getting a g-tube. Would they have suggested no anesthetic? Why did Owen have to suffer because they didn’t have their papers in order? What about “first do no harm?”