Monday, January 23, 2012

Hope and the Art of Being Wrong

It's been a long, long week.

To understand trying to bounce back from a stomach virus on the ketogenic diet, imagine getting over the puking part of a tummy bug, finally getting past the point where you can sip water and you want some Sprite or ginger ale or juice. But you can't HAVE Sprite or ginger ale or juice. You CAN have some heavy whipping cream with egg, though. Mmmm. That sounds disgusting (and rightly so), so you stick with water and pedialyte and finally decide you're ready to nibble a cracker. But you can't HAVE a cracker; that is, unless you eat it with a big fat slab of butter. Horrifying, huh? The last thing you want when you're healing is something fatty, but that's all you CAN have on the ketogenic diet. But you have to eat something, because if you go too long without eating, your ketones soar, which also makes you nauseous. We have the added complication of not knowing exactly what Collin needs. We can take blood ketone and glucose measurements multiple times a day and record his fluid and caloric intake, but none of that adds up to a simple, "My tummy hurts," or "I'm hungry." So, we inevitably end up making decisions that make things worse rather than better.

I've told several people that Collin has taken two steps forward and one step back this week, but it's really been more like two steps forward, one step back, four forward, six back, three forward, almost fall down, jump back up and take off running, trip and skin both knees and then roll down a hill, skidding the last little bit face up and finally landing with pants in a permanent wedgie and shirt up around the armpits.

Today, over a full week out from the onset of his stomach virus, things had gotten so bad that we had to take him back off of solid foods and order a feeding pump so that we can give him his food and water slowly enough to keep from upsetting his tummy and triggering a massive retch fest that throws him off for the rest of the day.

I'm sitting at the dining room table as I write this, calculating and recalculating Collin's next meal (I'm thinking 13 grams of cream, 20 grams of chicken broth, and 1 gram of oat cereal, with a dash of branched chain amino acids for protein - that will put his fat to carb/protein ratio at 3:1 and give him 50 calories while keeping the volume down to 1 ounce) while I wait for the enteral supply company to deliver the feeding pump that will hopefully take some of the pressure off of us in getting all of the water and calories Collin needs down him during the day. And I feel...excited. Well, that might be a bit strong. I feel...hopeful. Even in my bone weariness and with our dismal track record this week, I feel a lightness that comes from the hope that the next step in our plan of action will improve things for Collin.

I'm not being blind to reality or falsely positive. I've realized it's actually a pretty sophisticated skill that I've developed over three years of learning how to live life with Collin: the art of being wrong. More specifically, of being wrong and moving on. At the beginning of our journey, I clung so fiercely to every possibility of relief for Collin that I suffered total devastation when it didn't work out. After enough disappointment, I stopped even considering possibilities in order to protect myself from the crushing blow. But gradually, through time and experience and lots of grace, being wrong has become less of a fear and more of a way of finding an eventual answer. So, I'm free to hope.

Speaking of which, I have a feeding pump to set up.



6 comments:

  1. Oh my. Praying and prayed for you all this week!

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  2. Having survived the weekend on nothing but ginger ale and two Zesta crackers, I can NOT imagine trying to manage nausea on the ketogenic diet. I've been thinking of you all. Let me know if there is anything you need.

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  3. Thinking of you and hoping the feeding pump is a big right.

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  4. Hopefully Collin is feeling better by now. I stumbled across your blog while looking for ideas for recovering from Stomach Flu while on Ketogenic diet. Our 8 year old is on the Ketogenic diet -- which is successfully keeping seizures under control (11 months seizure free) but he's having a dreadful time recovering from this virus (which of course we all ended up getting). Going on day 8.

    Anyway, you guys are real champs! I looked at Team Collin and thought that was really cute -- so much to keep track of!!

    Have a blessed day!

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  5. Thank you so much for posting this 2 years ago! I don't feel as alone now. My 16 month old daughter has a gastrointestinal illness and we are having the hardest time treating her on a 4:1 ketogenic diet. At the moment she's living off of avocado's, diet ginger ale, and water. It's been a week, a disgusting week, but I can see you eventually got over it and hopefully we will too. Thanks for your updates!

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  6. You're so welcome, Anonymous. I hope things have turned around since you wrote this and she's back on the right track. Please write if you need to bounce ideas off of someone.

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