Friday, August 12, 2016

Feeding Tube This and That

What a week. It was a tubie kind of week. If you don't have a tubie in your family, you won't get that. If you do, well, you are sighing and patting the screen in empathy for me.
Linus has been doing so well with his tube surgery. But now he's having a harder time. He's having some pain at his site and we aren't sure why. His surgeon gave him the all clear, so we know he doesn't have an infection or issue with his site that can be seen. But he's really hurting and not happy about it. 

Add in that he's gotten some infractions this week on his diet that I am not sure what they are and he's also in a horrible mood with food reactions. Poor buddy. I just want to snuggle him up and make it all go away. I feel so bad for him. 

We also learned these past 16 days since his surgery that he has a reaction to tape. Sigh. He had tegaderm over his surgical site, that was not good. He had tape after that, it was even worse. Every tape tried just tore his skin up. He has blistering and his skin is peeling. His surgeon told us to not allow anymore tape to be put on him unless it is a true emergency situation. 

That wouldn't be horrible but we are still working on moving him fully to a blended diet
(wahoo, even his GI is happy we are doing that) so he still has night time feeds. With those feeds come a need to tape his extension to his stomach so it won't move or pull on the feeding tube. That had to stop. Tonight was our first feed without the tape. I had no clue what to do. I hmm'd and haa'd for a long time. Someone on a feeding tube support board suggested wrapping a piece of tape around the extension creating a tab on the tubing and then using a clothes pin to attach it to his shirt. Then it wouldn't move but the tape wouldn't be on his skin. 

I tried it. 

I thought it would work after looking at it. 

He came to me 96 calories later unable to stand it saying it was pulling on his tube and it hurt because it moved with his shirt. No matter where we put it he didn't like how it pulled on his tube as he moved and it caused stinging in his site. Grr. 

So, I pulled the formula and pump and gave him a small blended feed to at least give him some of his calories and now I have GOT to figure out how to effectively give him all of his calories during the day without slowing down his oral feeding and it needs to happen tomorrow instead of a weaning process. 

Eh, who needs sleep. 

I went into this surgery thinking it would be a breeze since I am a second time tubie Mom. Ha ha ha, yes, the laughter is loud here. 


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