the big syringe, redux

Well, this time - we remembered the big syringe. So we passed that crucial check-point.

The last Sunday in October, we went to church with my mom & dad. They're fairly recent members at that church, but are still reasonably-well plugged in. But, for context - "they're new there". Anyway, their service starts at 10am. This is also Evelyn's mid-morning meal-time.

I figured it would probably be easiest to just use the Big Syringe to push food in while sitting in back, instead of breaking out the whole feeding pump & bag apparatus. So, thusly prepared, we headed off to church.

Mom & dad went ahead and saved us some seats at the end of a row in the back, so we could get out easily if need be. This later proved to be a fortuitous decision, but at any rate, we went in, got settled, and the service began. We sang some songs & hymns, and many of the normal "churchly" things, and then about 10:15, settled in to begin feeding Evelyn.

It all seemed too easy - Evelyn was sitting quietly & contently in Kim's arms; I was pushing the food in with the syringe; 2.5 mL every 30 seconds or so. This Big Syringe was an even bigger syringe than that last Big Syringe (see the image above; contrasting it with a regular 5 mL syringe) - this one holds 2 oz (60 mL), instead of 1 oz like the old Big Syringe. It was a little tougher to push in, but I attributed that to maybe a slightly-narrower NG-tube (Evie has a new type of tube), and/or the fact that we were using an adapter for the syringe, as the syringe's tip was a bit too large for this new NG-tube.

In any event, other than that, all seemed well and Kim and I were both having an "aren't we a happy little family" moment. The singing wound down, and the preacher had just begun a prayer. Another 30 seconds had elapsed, so I casually began pushing in another 2.5 mL.

"Pssssssfffffffffffft".

Recall, this is in the middle of a prayer at a church service, so it was like the "Psssssfffffft" heard 'round the world, as far as we were concerned.

We watched in horror, as in slow-motion, the adapter broke free from the tube input. However, motion & time were not, sadly, slow enough for me to release my fairly stiff pressure on the plunger of the Big Syringe. As one might imagine, this course of events ended up sending a big, fat stream of KetoCal shooting across Evelyn, Kim, my dad, and an innocent bystander seated diagonally in front of us. I'm pretty sure we also misted some other bystanders.

Taking an aside, to help you comprehend the magnitude of this Rain of KetoCal - I ran a small test at home, after all events had transpired. I loaded the Big Syringe up with water, put the adapter tip on, and shot the water from my parent's back deck clear across their back yard; a healthy 20 or 30 feet. So there's some power there.

Needless to say, back in church - time began to speed back up. Quickly. Dad, dripping with KetoCal, started to hee-haw (and grin like an animal that hee-haws) from down the row, while the poor lady in front began to process that she'd just been splattered with an ample barrage of formula. "That's strange... I'd swear I was just hit with a fire-hose. Only one that dispenses baby formula. Except I'm in church. Wrapping up a prayer. Interesting." Luckily, she was also the mom of a 1-year-old, so "she understood" - most graciously. Perhaps even more luckily, she was wearing a water-resistant jacket, so most of the would-be damage was easily wiped off.

Needless to say, after many apologies and some quick clean-up, we hightailed it out of the sanctuary to complete Evie's meal (told you that back seat was fortuitous!). While outside of the sanctuary, we ran into another kind lady we'd chatted with the prior week, who worked as a chaplain at the children's hospital. As we red-facedly relayed the chain of recent events, she advised perhaps Evelyn was just taking the preacher's sermon to heart, and sharing what she had with the world? ;-)

Anyway, being as Evelyn apparently learned last week's lesson a little too well - we skipped church this week. ;-)

600 grams

This is an amusing ... story; anecdote; something I thought y'all would appreciate. ;-)

So, we're starting the ketogenic diet with Evelyn. I'll detail that in a separate post. Particularly because she's a baby, we have to be very precise in how much food (a special formula - KetoCal) we give her on the diet, as it's a delicate balance of ketosis to be maintained, plus we don't want her to actually lose weight. Thus, a precise scale was recommended by the dietitian; one that can measure in tenths (0.1) of a gram.

While these can be procured online, brick-and-mortar stores carrying them are harder to find. We didn't want to wait for a shipment, as we wanted to go ahead & get things going. Moreover, Kim wanted a smaller-sized scale - e.g. easily portable or what-not - so if we had to feed Evie "on the road" - it could be done. So, I was tasked with procuring one from one of few the stores known to carry very precise scales (and recommended for this reason by the dietitian!) - a "Department Store" which shall remain nameless. I couldn't even find a website for them, but they're a local chain here in Phoenix, as best I can tell. And they're not your "usual" department store - no lady's and housewares (though there might've been a jewelry section!). They are a ... "pipe store". Or "smoke shop". Or "counter-cultural and related paraphenalia store".

For those not catching the drift, it is a store which sells drug-related paraphernalia. Bongs. Incense. "Cigarette" rolling paper. And, yes - very precise scales. In the event you wanted to weigh something "small and expensive" in precise quantities. Like KetoCal! ;-)

So, I walk in on my lunch break (e.g. dressed for work), and was immediately on sensory overload between the burning incense, giant wall o' bongs, tye-dye everywhere and the Dead playing not-so-softly in the background. So I asked to be directed to the scales, to which I was gladly pointed. I ask the kind "salesman" for help in choosing a scale that was precise to the tenth of a gram, was reasonably small, but also wasn't too pricey. He recommended a few models, but then he posed a question (or a point) that we hadn't considered: How much weight would we need to weigh? E.g. what was the upper-limit of the scale?

To complicate things, because it was all quite precise, we're going to be mixing Evelyn's food up all at once. So, we're talking about a whole day's worth of food, not a single feeding's worth. The model otherwise seeming to most meet our needs only went up to 600 grams. I had no idea what 600 grams looked like or felt like; I'm not a metric guy! ;-) The "salesman" pulled out some calibration weights, in 200 gram increments. This helped a little, but was deceiving, since they're quite dense, as compared to the KetoCal formula.

While I was pondering this and calling Kim to ask how much food we'd have to weigh at once for Evie, my first "salesman" got preoccupied with another fine & upstanding customer. I got off the phone with Kim, and was still pondering the scale, when another "salesman" walked up. Now, I hate to call anybody a dirty hippie, because I know plenty of good, upstanding & most importantly clean hippie-types, but... this guy was a dirty hippie; dread-locked & just... dirty (literally). ;-) I labor at all this description only so you'll fully appreciate the hippie "dude" expression, said as only a hippie can say it.

He sees me really quite consternated over this scale, so I explain that "I'm just not sure if I'll need to measure more than 600 grams or not."

Him: "DUDE - it's 600 GRAMS!" [as if to say, "unless you're starting your own cartel - that's plenty, man!"]

Me: "Oh, yeah... well... I'm not trying to measure what you guys... normally might measure with this."

Him: [look on his face of "yeah-if-I-only-had-a-dollar-for-every-yuppie-looking- white-boy-that-comes-in-here-looking-for-a-scale-that-measures-to-the- tenth-of-a-gram-that-will-fit-in-his-pocket-that-wants-to-weigh-'other stuff'-with it"]

Me: [ignores look] "Yeah; I'm trying to measure food with it."

Him: [look of "Yeah.... 'food'... whatever helps you sleep at night, buddy"]

[awkward pause]

Him: [finally asks, gesturing with his hands an approximate size] "So... like... how much are you trying to measure?"

Me: "Well, it's baby formula - so it's ...." [I stop short as I realize I'm about to describe it as "a fine white powder"] "...well, see, my 4-month-old daughter has a seizure disorder. So there's this special diet that she has to go on, but we have to be very precise with how much she gets, as it's a delicate balance of the diet controlling the seizures and keeping her from losing weight. See, the diet puts your body into ketosis - just like the Atkins diet - which produces amino acids which bind with certain proteins in the brain, which - in about 30-50% of the general population with seizures - helps control seizures."

Him: [look of "oh-wow-either-that's-cool-or-this-guy-really- put-some-effort-into-coming-up-with-his-excuse"] "Wow... so it, like, stops the seizures?"

Me: "Yep; about 30-50% of time."

Him: "Cool, man... cooool."

So, long story short, we are now the proud owners of our Jennings JS-600V pocket-sized ultra-precise scale for measuring out our expensive fine white powder.

And that's the honest truth, Your Honor. ;-)

don't forget the big syringe

We had a check-up with the neurologist today down at PCH. Which meant the inevitable task we'd been dreading had finally come: having to feed Evelyn "out in public" with her feeding tube.

Now, it wasn't really the "public stigma" or "embarrassment" factor causing this fear - I'm not entirely sure that'd bother us much anyway, but even if it were to - c'mon; this was the hospital we were at. No, it was the fear of the logistics involved with such a task. The pump, and the feeding bag, and the formula, and the syringe to flush the tube, and the medicine for her 2:00 Depakene dose, .... daunting, to do it "outside the house" for the first time, to say the least.

So, Kim dutifully packed everything up, picked me up from the office, and we headed on down to the hospital. We had our meeting with the neurologist at 1:00pm (more on that in a later post), and then it was time for Evelyn's 2:00 feeding. So, we went down to the lobby of the outpatient building, and set up. Kim pours the formula in the newly-unsealed bag, and..... Yep; Mr. Murphy visited, and the bag had a leak.

At this point, we were a bit stressed - what do we do now!?!? We left The Big Syringe - to pump food in manually - at home! We had no other way to get the food in, except via the pump that needed a bag that had a leak! While I held a growing-fussier-by-the-minute Evelyn and schemed on patching the leak up with chewing gum, duct-tape, and/or bailing wire, Kim went around to see if she could find another feeding bag - we were at a hospital, after all!

Luckily, she found another mom with a child being fed via feeding tube as well, who had a spare big syringe, just in case. I then hand-pumped in 2.5mL every 30 seconds for 120mL (that's 24 minutes). ;-) While an onerous task, it wasn't so bad, and probably beat the chewing gum, duct-tape and bailing wire solution I had drawn up.

Lesson learned: Don't forget the big syringe. :-)