Yesterday's appoitnment.
@kaylachan (77367)
Daytona Beach, Florida
April 8, 2025 4:16pm CST
I noticed I didn't go into a lot of detail about what happened yesterday. Instead I ranted about what happened. So, yesterday we saw the nutritionist, and she's the one who orders the formula, and makes sure I have supplies. So, that's good. George is still on his three cartons a day, instead of four. but he rounded back to wanting the tube out. But, he's not ready.
Yesterday, he ate four hotdogs, today one yogert. Day before yesterday, nothing. So it's not consistant and not near enough. Plus, I am concerned he's not absorbing liquid properlly, because when I slack off on his flushes, he shows signs of dehydration. So I need to think about that, too.
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5 responses
@thislittlepennyearns (63915)
• Defuniak Springs, Florida
9 Apr
Does he do anything other than formula through his tube? Any hydration supplements or anything
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@kaylachan (77367)
• Daytona Beach, Florida
9 Apr
He drinks milk by mouth religiously every night before bed. He also has his pepsi on hand, but we all know soda can be dehydrating. The problem is, despite his inconsistant oral intake (save from the milk and pepsi) is he's not taking enough orally. He does drink the formula, but leaves about two ounces behind when he does, sometimes less, because the more he swollows the slower it goes. And, he eats orally, but it varies from a single yogert or two slices of American chease to up to four hotdogs in a day, but he's not consistant. He will go days where the tube food and his milk are the only nutrition he gets.
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@thislittlepennyearns (63915)
• Defuniak Springs, Florida
9 Apr
@kaylachan None of that sounds very hydrating. What about something like Gatorlyte or Pedialyte.
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@kaylachan (77367)
• Daytona Beach, Florida
9 Apr
@thislittlepennyearns He won't drink it, or he won't drink enough. I waste more pepsi then he drinks. And, while the heat is making him drink more, I am also making sure I put at least 180 mls of water down his tube two to three times a day, or about six oz's a day making the total anywhere from to about 12 to about 18. which is the equilvent of like t almost six glasses of water give or take. if you look at it, it's like two glasses of water, on top of his quarter cup of milk. I was doing two flushes before and it worked for a while, but then he started showing signs of dehydration, so I stepped it up.
@RasmaSandra (84472)
• Daytona Beach, Florida
9 Apr
I wish you the best of luck with that and hope that soon George can get around to regular eating,
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@FourWalls (74225)
• United States
9 Apr
That’s not very appetizing, but I know that you have to appreciate the fact that he IS eating. Does he like applesauce?
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@kaylachan (77367)
• Daytona Beach, Florida
9 Apr
He hates it with a passion. It's all hospitals seem to keep on hand though.
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@mnglsp (3645)
• Philippines
11 Apr
That totally makes sense—there’s a big difference between venting and walking through the details, and both are valid in their own time. I’m glad you got to meet with the nutritionist and that she's helping with formula and supplies—that kind of support can really take some weight off your shoulders.
As for George, it does sound like a tricky balancing act. I can see why he’s longing for independence and wanting the tube out, but the inconsistency in eating and signs of dehydration really do point to the tube still being necessary for now. That must be frustrating for both of you in different ways.
It sounds like you're doing such a thoughtful job tracking all these shifts. Have you noticed any patterns—like certain times of day when he eats better, or conditions that help him take in more fluid?
