Benjamin had his swallow study on Friday.
Matthew had to meet me downtown at Children's to go in the room with him b/c I couldn't go in the xray room. LOL
It was confirmed that Benjamin is aspirating when he drinks the thin liquids, but not the nectar consistencies or the solids. They said to keep thickening his liquids to a nectar level for the next nine to twelve months and then come back for another study.
I think the worst part of all of it is that his poop is NAAAAASTY. Because he's not getting anything liquidy throughout the day, his poop has the consistency of peanut butter. It is the grossest thing ever and is very hard to clean.
So I was sitting in the waiting room feeling sorry for myself and then I met a mom. Her son was with her. He is 18 and in a wheelchair. He had casts on both arms. He doesn't talk. I'm not entirely sure what his situation was, but his mom said that he has gotten a cold every month for the past year and a half. They finally did surgery to clean out his lungs. Twenty minutes later, they were full again. They can't figure it out. He was there for a chest x-ray and an upper GI. She said they're talking about giving him a tube. She said that eating is the only thing in his life that gives him any joy. And now he won't be able to do that anymore.
Wow. And I realized that I can handle some peanut butter poop.
10 comments:
isn't it amazing, when you are feeling down, that you can meet someone or read a story that puts thing in perspective. hang in there w/ the pb poop when m/s kicks in!!! :)
Things like that put it all in perspective huh?! Hey, if you decide to use Simply Thick to thicken his liquids I have a whole box full left over from when Kennedy was aspirating. It's yours if you want it and it's SO much better than Thick It. It's gel instead of powder so it's not gritty. Anyway, just let me know if you'd like it! :)
How funny! I was about to offer to send a few packets of Simply Thick for you to try. It really is so much better than Thick It. How nice that Renee offered you a whole box! The NICU started Lila on Simply Thick due to aspiration and we're still using it.
Hugs!
Oh how sad for that family. I'm glad there is something that can help Benjamin, but still sad you guys have to go through this stuff.
What a way to put things into perspective! I'm glad though that you guys finally have an answer to all of the stuff that's been causing such difficulty for baby B! And thus far, he's beaten the statistic on everything else, so maybe this will be fixed before 9 to 12 MONTHS! Eegad! I know it's frustrating for you though! BIG HUGS!
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I am sorry you have to deal with all this stuff, Angela. I know it must be so tiring.
I am sorry for anyone affected by chronic hardship. You make it look beautiful, though!
Love you-
Steph
hey girl, you may already know this, but you can buy drinks "pre-thickened" to different consistencies. They come in little juice boxes. I think it's a bit more expensive, but it would be nice to have when you're on the go. :) I don't know of any websites off hand, but if you find any that will give you a discount for being a "medical professional," let me know and I'll order it for you. :) I get lots of discounts on those sorts of sites just for being a PT. Go figure. :) Next time we get a rep through, I'll see if I can score some for you for free, too. :)
peanut butter poop! sounds like a candy at a gag gift store.
it's amazing how easy you can snap out of a pity party when you see someone who's struggles are a whole lot harder than yours
Here's a little tidbit of information: The thickeners thicken without binding the liquid molecule. So he's still getting liquid, but not in liquid form. LOL (does that make any sense?) They have a huge new line of foods that I didn't know about until I just looked at the website this morning. I may actually get some for Angela!
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