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Saturday, June 25, 2011

A little experiment

And no, I'm not referring to the experiment the kids did last week where they put a fly in a bottle of Raya's bile and left it there to see if it would get digested. (it didn't and Cole decided to shake it and spilled on the floor so it had to get thrown away because it stunk up the whole house) I digress.
Anyway, after having 4 big nasty messes this week from Raya's bile drainage bag either coming unplugged or the extension tube breaking off, we decided to try leaving her clamped overnight last night. Every time it broke or came unplugged, she was in bed either at night or for naps. I even tried leaving it clamped until 5am once but between 5 and 7 it drained a huge amount and then came unplugged and spilled on the floor again, so I gave up on that idea. (who wants to get up at 5 to plug in a bile drainage bag anyway :)
We expected to wake up this morning to her puking everywhere but she didn't. She was doing a lot more coughing and loud swallowing than normal, which sounded like reflux to me. Donny plugged in the drainage bag at 7am and within an hour, she had still managed to drain 80ml, which is actually pretty average for 8am. It kind of confirmed my theory that she doesn't drain much, if anything, until the early morning hours when she starts to move around and starts to wake up. 
With that in mind, we decided to do things backwards today and instead of draining her most of the time and only giving her a few hours off, we just drained her for 30 minutes at a time (or less) every couple of hours throughout the day. We drained for a total of 6 hrs and 45 minutes and she still managed to drain 290ml, which is almost 10 oz. A little below her recent average but still high. We've decided to keep doing this for a few days and see how it goes. If she's still going to have the same amount of drainage this way and if it doesn't make her uncomfortable or make her throw up, we would all rather have her only be hooked to the bag for 6 hours a day instead of 20. On the side of caution, I will still be covering the floor around the crib with towels tonight but maybe she'll surprise me and keep doing well with this. Hopefully this is a preview of how she'll handle things when we switch from the GJ back to the G tube next week. Fingers crossed for tonight. :)

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