Wow, what an ordeal for all of you. But you don't sound too traumatized so that's a good thing. I hope all goes well with the feeding tube. Once he's gained enough weight with the tube and they take it out, are they certain that eating the normal way will be successful for him? I hope so.
Glad the place is pretty cool though. I guess if you have to be admitted somewhere, that peds ward is a good place to be.
We've gotten a lot more information since we're GOING HOME TODAY!!! They said that once he starts gaining weight well (he's already gained a pound and a half!) they'll wean him off of the tube feedings as he gradually starts to take in more food through his mouth. So like right now, he eats breakfast through his mouth, and then an hour or so later, he eats through his tube. Eventually if he starts eating well thru his mouth for breakfast, we won't have to do a tube feeding for that meal....does that make sense? We're sort of training him to eat, and then making up for whatever he misses through his nose.
Poor guy! The nose tube insertion sounds awful. I'm nearly having a panic attack thinking about it. I hope things go well the rest of the week and he gets to go home soon!! Very cool they have so many toys and let you guys roam!
That sounds so hard to go through but like a wonderful facility which is exactly what you need in such a tough situation. I sure hope they can figure out why he's not gaining weight normally, or do they know already?
All of his testing is STILL coming back completely normal. So they're saying that he probably just isn't wired the same way as everyone else. He doesn't understand "hungry" signals. So with the five tube feedings a day, we're teaching him that *this* is what his tummy feels like right before eating time....and *this* is what it feels like when it's full. The child psychologist thinks he's probably developed some anxiety around food issues....which would be understandable too....;-)
Shit! When you described how they wrapped him I knew it was going to be bad. I am SO sorry you both had to endure that. I started crying when I read how he screamed and knew how gut-wrenching that must have been for you. :( {{{You both}}}
p.s. Sometimes when I tell stories of when Erik was little & an upsetting event he/we had to endure I STILL can tear up....the memory and feeling is so strong & never leaves....all comes back way too easily.
God, it was horrible! But you know, the one cool thing about the nose tube being so awful, is that it put everything else in perspective. So yesterday when they had to draw blood, he cried, but then he said "Oh! That's wasn't as bad as my nose-hose!". Still didn't make him any happier to have his labs done again this morning.....but at least it's not as bad.
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Glad the place is pretty cool though. I guess if you have to be admitted somewhere, that peds ward is a good place to be.
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p.s. Sometimes when I tell stories of when Erik was little & an upsetting event he/we had to endure I STILL can tear up....the memory and feeling is so strong & never leaves....all comes back way too easily.
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