Owen had been NPO for the past week due to him choking and needing to be suctioned every time he ate. We had the swallow study and confirmed that he was aspirating
Owen is now only tube fed although his doctors have said we can give him just a few bites for pleasure. We have pretty much decided against that because on the rare occasion that we have given something to him he requires suctioning and it just isn't really worth Owen's discomfort.
Anyone's DC strictly tube fed? I was really upset at first but after seeing how negatively it was affecting him- I have tried to just get over it. I am just sad that at dinner and even his birthday party he can't enjoy like the rest of us. Any advice?
Re: Owen's swallow study results
I'm sorry. I'm sure those weren't the results you were hoping for.
Drake is strictly tube fed but the difference is he always has been. We are working on oral stimulation because he has oral aversion. Are they planning anything for the future for Owen? You might want to keep him at least licking things (i.e. popsicles) so he doesn't develop the same issue. Our OT advised us to decide whether the positives (correcting his oral aversion so he can eat in the future) out-weigh the negatives (suctioning him more frequently). Another major difference is that Drake has a trach and needs to be suctioned anyway and is probably easier to suction than Owen.
It really kills me that we can't feed Drake like we eat but he has never known anything else. He does show interest when he watches us eat and that's when I have a hard time with it but when we give him something he doesn't want it. Owen might be a little different. I hope he doesn't have too hard of a time with it!
I hope some of that helps! Good luck!
I'm sorry to hear about that! That really sucks badly.
Emerson doesn't aspirate, but he won't eat either. We try to offer bites here and there but he just pushes away. It is very hard to watch him be tube fed strictly, but since his stroke, he just hasn't been the same. It's like he doesn't even know what to do with food or a bottle anymore. We won't be pushing eating more than a few bites a day until he is finished with chemo. I wish I had more advice to offer you, but just know that there are a lot of other kiddos out there being tube fed too!