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.

Tuesday, January 17, 2012

January Is Not Our Month

I am really not a superstitious person. But I've come to the point where I don't even like to think about January.

First, we had this January. And then this one. And now, Collin has mysteriously contracted some kind of stomach virus that has brought things around this house screeching to a halt. That's three for three, folks. It's enough to make you wonder what it is about January that send Collin into a retching tailspin.

As you may remember from early June, stomach bugs and the ketogenic diet don't mix well. It's a constant struggle to balance ketone levels, hydration levels, sufficient calories, and foods that are easy on the tummy (not fatty foods, which is problematic). So far, it hasn't been nearly as bad as his experience in June, I'm sure partially due to antibodies and partially to all of the lessons we learned from that debacle.

Of course, the added complication with Collin is that he can't tell us anything. No matter how many strategies I may have learned in June, how to apply them is based solely on my best guess. Collin isn't looking good. Is he weak and needs more calories? Is he nauseous and needs a break for his tummy? Are his ketones shooting up? Wait, the ketone monitor says they're low. That's strange, considering how few calories he's been getting. Well, that means no Pedialyte or plain broth because of the carbs. So I can either give him some cream and fruit or plain water or nothing. I can't tell for sure which is the best, so I have to just pick one and see what he does. Not only is it a totally unsatisfying way to try to care for your child when he's ill, but it makes my brain hurt.

So, we're hunkering down and canceling everything and doing our best. It's the only good plan we have and we're hoping it keeps us out of the hospital this time.