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Friday, April 1, 2011

Crazy Food Pump Ramblings

Coming off of a blog about kindness, this blog may not seem very kind.

But I don't think feeding pumps deserve any kindness when they beep at me and read "FEED ERROR" for no apparent reason.

It drives me insane.

I've gotten so enraged by this little necessary evil beep...beep....beeping at me that it won't budge another milliliter of ketogenic formula and it won't give me an answer, that I've considered throwing it through a window!

I've been so pissed off at this thing that I've yanked the tubing out of it, thrown the spare pump across the bed (onto a soft landing, but still), yelled at it, as if it were human and could understand. Maybe it is part human. And it taunts me.

I've even taken a meat tenderizer to part of the tubing on a bag that was clogged. The little plastic piece of titanium (or some substance mysteriously unbreakable) that hooks to the pump and pumps the food through never knew what hit it. Yup, the big mallet thing in the kitchen you only really use maybe twice a year, well it was used at least once this year. And I'm not ashamed to admit it.

But, alas, that mysteriously unbreakable piece of plastic is, in deed, unbreakable. The meat tenderizer was no match.

I'm sure this sounds like the crazy ramblings of a mother out of her mind, and it is! That feeding pump is going to get the best of me!

On a good note, Christian did GREAT with tasting yogurt yesterday. He moved his mouth and his tongue and gave great, big, hearty swallows quicker than he ever has. (Was it ketogenic? No. But our dietitian said a taste won't ruin anything. And nothing happened, so the yogurt stays.)

Hopefully he'll keep it up and we can say goodbye forever to that pump someday. And then that pump better watch its back because my meat tenderizer needs some usin'.


Anonymous said...

Help me understand about the yogurt in the space of a keto diet. I read this a few posts ago:

"See, this diet is so precise that even a mis-measurement of a single gram can set something off. Until now, Christian hasn't been seizure free enough to make any comparisons. But the other day, he was irritable and I thought maybe he was in pain so I gave him a half tab of extra strength Tylenol (which I have to use because he can't have sweetened children's Tylenol syrup and the regular tab strength doesn't work). Extra strength Tylenol has a higher carb content. He had clusters within the hour. Then he was fine the rest of the day and we haven't seen anything since. Just a simple thing like that can effect the diet. And it tells me the diet is working."

Is it hard to keep the keto diet in balance when outside food is introduced? Does it cause seizures? I give you credit, I would never be able to figure it out and keep it to the gram the way it is supposed to be.

Peg said...

Shauna I swear you should write a book.

ShaunaQ said...

Anonymous -

Actually full fat Greek yogurt is a great source of fat that many parents use to rotate in their keto kids' diet. It is a perfecty acceptable food to maintain the desired keto ratio.

We did not use Greek yogurt, however, when doing tasting exercises, we are not measuring out spoonfuls of yogurt. They are literally pea size amounts just for tasting and swallowing exercises. That is why we got the okay from our dietitian.

Yes, the 250 mg of Acetaminophen affected Christian because it is a medication and it is a large dosage, being considered "extra strength." So it isn't uncommon he would react with more seizures. Furthermore, he was seizure free at the time of the extra strength tylenol so it was easier to measure affects from a baseline. Unfortunately, he has spasms again (especially due to ANOTHER molar coming in), which was expected after he got well, so there's no longer such a gap in affects.

It's all trial and error. If he had reacted negatively to the yogurt, we know it pushed his ratio too much and we'd stop. It didn't effect him, so a peasize amount for tasting exercises has no effect on his ketosis.

For keto kids who eat by mouth, yes, it is very difficult when non-keto food is introduced. Every child is different and some need lower ratios of fats to carbs and can allow more room for non-keto foods. Some have to have the highest ratio (4:1) there is. And with an epileptic child ANYTHING can cause seizures - teething, fevers, pain, hormonal changes, food, the weather, gas, you get the picture.

Measuring formula does require extra time, but the end result is worth it.

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