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Surprisingly, Raya's cardiology visit was the MOST pleasant doctor's visit we've ever had. Based on the number of visits we've had, that says a lot. :) She behaved PERFECTLY (other than the poopy diaper) and didn't cry, scream, or puke at all. She was cute and charming and happy the whole time. She had an EKG and since she held so still & behaved so well for that, her heart function looked fine so we didn't have to do an echo. The NP (who I really liked, by the way) listened to all the different parts of her heart and said that her murmur sounded like a very typical innocent murmur. Just to make sure, she had one of the cardiologists come in and listen too and he agreed. It's very common and nothing to worry about. The words, "We won't need to have a follow-up with Raya." were like heavenly music to my ears! We've never been told that before. :) So the cardiology consult is out of the way and I don't have to be paranoid about that anymore. Yay.
Side note, while the NP was listening to Raya, I caught a whiff of a poopy diaper so I changed it while she listened. She said she didn't smell anything at first and I thought she must have completely lost her sense of smell. Then she left the room for a minute & came back and said, "Oh. Now I smell it. That's weird." Which just further illustrates my point that GJ tube/formula fed/abnormally digesting children have very strange poop. The end.
On to other news, Raya's stomach continues to drain massive amounts of fluid. Yesterday she hit a new PR of 505ml. (PR as in personal record. Trying to put a positive spin on it. :) That's just shy of 17 oz. We're doing our best at keeping the pedialyte flowing to keep her hydrated and with the exception of 1 day where she was going for 7-8 hours between wet diapers, she seems to be doing fine with hydration. Now that the triple-digit temperatures are here to stay for the next 4 or 5 months, it's going to be even more important and also a little more difficult to keep her hydrated.
I did get a phone call from the nurse this morning & she said the doctor had reviewed all of my updates (there were many updates) and wanted to know if anything had changed since my last one a few days ago. I told her she had hit 505ml yesterday and that at her weight check, she had lost 12 ounces, which she already knew but I reminded her anyway. :) She said the doctor wants to order a barium study. Hooray, more barium. Ha ha. This time, they'll inject it into her G port and into her J port and follow it to see what's happening in there. She's thinking that maybe the J tube is blocking something so if the barium doesn't flow like it's supposed to then we'll know that's the problem. Optimistic Mommy wants to believe that this barium study will show us the problem & there will be an easy fix and she'll be back to how she was before the tube change. Pessimistic Mommy is pretty sure that this study won't show anything abnormal or helpful because they never do. Darn that Pessimistic Mommy!
Well, that's about all there is for today. Off to change yet another poopy diaper and mop up what's left of the trail of bile Raya left on the floor when she got the cap off the drain bag. Gross stuff. Happy weekend!


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Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

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That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

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Feeding Tube Terminology: G tube words

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Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
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