Abby ate a cow

The parking in heaven must be hell. All those dead people who ever lived looking for a spot to hear Mozart and Gershwin in concert, with Keith Moon on drums. Imagine the honking, although this being heaven, the honking is surely mellifluous.

This is how the mind wanders when stuck on a side street in Montreal, trying, along with the other unbudging cars, to find a spot reasonably close to the hospital. Walking distance was looking increasingly unlikely. After I made a U-turn, drove several blocks and jammed my car into a snow bank beneath a sign that read “Stationnement 15 minutes,” I settled for sprinting distance.

Here’s why we were at the hospital:

TYR Coolers

Red.

Abby’s metabolic condition, tyrosinemia, is controlled through medication and strict diet (specialty foods, no meat, dairy, soy or legumes, minimal protein all around). She also consumes supplemental drinks that are universally blechy, whether the barfy so-called “milk” or the gaggy coolers. Gross or not, these drinks have all the nutrition she needs minus the amino acid tyrosine, which her body can’t metabolize. Even with medication, too much tyrosine can cause serious complications.

Recently, our dietician recommended that we move Abby up from Tyr Cooler 15s to Tyr Cooler 20s. I ordered a dozen to try. When they arrived, I noticed that the 20 cooler packs were identical to the 15s, except blue instead of red. We went through these pretty quickly so I ordered more. The new delivery of 20s arrived. These were red. Wait a sec…

We looked more closely at the label of the blue pack, and where the tiny letters “TYR” should have been there was a tiny “PKU.”

PKU Coolers. Other than colour, can you spot the difference?

Blue. Other than colour, can you spot the difference?

The distributer, we realized too late, had mistakenly sent us coolers for a completely different metabolic disorder, phenylketonuria. Abby had been drinking the wrong product for over a week.

I emailed our dietician that evening. She phoned back first thing the next morning. PKU Coolers, she told me, are enriched in tyrosine.

“Each cooler was like Abigail having a serving of meat,” she said.

Oh.

You have to understand that tyrosinemia is not an allergy. Her stomach wasn’t going to pull an Alien. Nothing was going to swell up or squeeze shut or fall off. We know this. For 12-plus years, we’ve lived by the mantra “Don’t Panic.” That and “Abby, Drink Your Milk.”

But we take it seriously. We have to. Consequently, when we say we’ll do the blood work locally tomorrow, and they say, no, here in Montreal, today, we do it. We tell our bosses, “Sorry. Gotta go!” drive two hours to Hôpital Ste-Justine, get snagged in traffic and then return through much of the same. We break it to Abby that she can eat only specialty foods today, no rice, no fruits or vegetables, no fruit juices, not even gummy worms. But drink your atrocious Tyr Cooler 20. This is our life. This is Abby’s life.

After we finished at the hospital and found the car, we stopped at a Maxi to pick up a few groceries. The lines at the cash were long, so I chose a self-checkout, those robotic barcode readers that, with soothing voices and instructive screens, guide you through your purchase without the hassle of human interaction.

“Please wait. Please see a clerk. Remove the last item from your bag and re-scan. Place the item in the bag. Please wait. Remove the last item from your bag and re-scan. Are you sure you need those muffins? Please see a clerk. Don’t you know she can’t eat gummy worms? Remove the last item from your bag and re-scan. You’re just teasing her, you know.”

A girl who looked like she worked there but was out of uniform so couldn’t officially do much more than point and laugh, eventually made it clear that Deb was leaning on the scale. Scale? We were paying by the pound?

Finally, I swiped my debit card. The machine howled at me to use the chip, dammit! I requested $100 extra and, in my fluster, nearly walked away without it.

I felt like an 80-year-old, and the self-checkout was my VCR clock.

We arrived home after 6, I cooked smelts and made a pasta salad while Deb made green salad and returned an urgent phone call. Abby had specialty mac and cheese, worked on her art project, and we learned How He Met Their Mother. Deb’s parents called and then Em called and there were dishes to do, James arrived home hungry, and he owed money at the gas station, I recorded something for radio, Katie found fresh sofa candy (between cushions + wrapped = edible). Abby had another Tyr Cooler 20 and arranged to go to the water park the next day with a friend. I wrote, ate too many jujubes, and then it was 1 a.m.

Machines, parking, traffic, days, evenings, bodies, metabolisms… They don’t always work the way we want them to, but we get through. Please wait. Please see a clerk. Don’t panic.

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About rossmurray1

I'm Canadian so I pronounce it "Aboot." No, I don't! I don't know any Canadian who says "aboot." Damnable lies! But I do know this Canadian is all about humour (with a U) and satire. Come by. I don't bite, or as we Canadians say, "beet."
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34 Responses to Abby ate a cow

  1. El Guapo says:

    So did everything get sorted, and her body will eventually just push out all the PKU?

  2. pieterk515 says:

    It’s wonderful how you deal with life’s “little” complications with a dash, or more like a huge helping of humour.

  3. …but there’s plenty of seats in hell for the Milli Vanilli show.

    “bleach” must be a Canadian term. This is my first exposure to it. Next stop, Google.

    I’m sorry to read of this trouble. Nobody should have to go through this, especially a child. What the hell happened?! I don’t recall anyone having all these dietary restrictions when I was a kid! Nobody had to eat gluten-free food.

    • rossmurray1 says:

      Blechy, like “blech! phooey! yuck! gross!” Blechy.

      Her condition is very rare — except in Quebec where I live, in particular one region (which makes it like a candy store for geneticists) that was fairly isolated in its early years of settlement, so, you know, gettin’ busy with the cousins and all. It’s so common in Quebec, in fact, that every child is tested at birth. We learned at 9 days. Ironically, I’m not from Quebec and my wife’s heritage English (therefore unlikely not part of that original pool). In fact her genetic mutation is different from the Quebec mutation. So it’s just a lucky coincidence that we’re in Quebec, otherwise Abby would have been diagnosed much later, which would likely have resulted in serious liver damage.

      Sorry. Long answer. My point is that it’s not an environmentally based allergy like those newfangled gluten allergies but goes back generations.

      • Wow. That’s fascinating. Will it work its way out of her system or will it always be a part of her? I always think these restrictive diets are so much trouble but I suppose if it’s part of your daily life, it’s not such a bother.

        • rossmurray1 says:

          Barring genetic engineering or a liver transplant, this is her life. It’s better than it used to be. The medication she is on is only about 15 years old. Before that, fatality was possible and not uncommon. Others had liver transplants but those were rare and bring on a whole other set of complications. It’s a tough life in a society so food-centric, but Abby is pretty cool about it. It’s all she knows.

          • It’s more than just “all she knows.” She’s pretty cool about it because you don’t stress her out and make it look like a problem. I’m sure she judges her condition through your eyes. More of the same, please.

  4. Paul says:

    That video is well done Ross, Did you narrate it? One of the great things about this age of electronics is the power of videos and such as teaching tools. I’m sure even a pre-teen (or younger) could get the gist of the issue with the video. The medication and dietary suppliments sounds expensive – are they covered by the gov’t or your health plan at work or is some out-of-pocket?

    Your daughter is lucky to have you and your wife to give solidity to her life. It’s my experience that when there are health issues that the everyday stuff takes on more meaning and provides a sense of security – routine and normalacy reduces the emotional impact of the health problem. It’s hard to fall into the pit of self-loathing when you have to put out the garbage, go shopping or go to school.

    It was amazing that the tyrosinemia was caught early even though neither you nor your wife were in normally affected populations. Your daughter must have a guardian angel. It sounds like she will have a normal and otherwise healthy life.

    • rossmurray1 says:

      She’s an active, happy kid. We go regularly to the hospital in Montreal where we see much more severe health and developmental issues. We count our blessings.

      No, that’s not me on the video. I found it a couple of months ago. It does a great job explaining, and I’ve shared it with people who are curious about it.

      Thanks for checking in.

    • rossmurray1 says:

      I forgot to answer your question about cost. Thankfully, it’s all covered by the Quebec govt. — medication and food. 100%. The only restriction is that we have an annual limit on one company we order from. Socialized medicine? I’m all for it!

  5. markbialczak says:

    I am glad to read that Abby and parents have gotten through a very blechy day, Ross. You didn’t even address how steamed you are at the company that sent to improper drink. So allow me to vent at them for you: Hey $=#%U*&$$###! Get your $^&*^#@)(&%$ in order!

  6. Rosemary, every day you amaze me even more. Abby is pretty freakin’ amazing too. We do what we have to and learn to cope. Then we learn what’s important and what’s just shit we complain about that ultimately is not really the end of it all. Serious life issues put the crap into perspective.

  7. franhunne4u says:

    Glad to hear your daughter had no serious damage from the wrong medication! Never heard of that disease before. I am glad I have no kids, less reason to worry about my genetics.

  8. benzeknees says:

    Glad to hear there will be no damage caused by the wrong drink arriving. A lot of care is involved, but I’m sure Abby is worth it!

  9. ksbeth says:

    wow, this is so interesting, i’ve never heard of it either. i’m sorry she is dealing with this, (as are all of you), but you seem to deal with it in a positive way. glad all was sorted out.

  10. Michelle Mertens says:

    I had no idea blechy was a Canadian term. I’ll have to use it more often.

  11. Addie says:

    There is complete truth in the saying There is no pain like the pain you feel when you can’t make your child better. It is crushing at times–my preemie Anne had RSV when she was 10 days old, and almost died. I made so many deals with God, I had pretty much promised my soul, the new car and her Dad’s left kidney…what? He has two, for goodness sake!…for her to stop with the heart stopping mess. Absolutely the worst two weeks in my life. My having cancer was a drop in the stress bucket compared to those two weeks.

    I’m glad she’s okay, glad Katie found decent sofa candy, thrilled I’m not alone in the Fight Against Self Check-outs, and have decided we may be related, since I do know–and use–the word BLETCH! and because you eat jujubes, too.

    Hugs all around.

  12. Elyse says:

    Even as a fake medical professional, and one with serious GI issues, too, I’ve never heard of this. Glad you are all dealing with it with humor when you van. That makes all the difference!

  13. Pingback: That’s a so-called wrap | Drinking Tips for Teens

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