Special Needs

Owen's swallow study results

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

  • My son is 100% tube fed. He has multiple issues that led to this. He was born with an extremely narrow upper airway that made it almost impossible for him to breathe. He was actually on a ventilator for 30 days after birth until he could have surgery to open up his airway. He also had open heart surgery at 6 days old. He also has malrotated intestines which was corrected with surgery when his G-tube was placed. Since my son could not eat at all during those first weeks of his life, he never learned how. He has absolutely no idea what to do when you put a bottle in his mouth. He also ?has really low muscle tone, so he can't suck very strongly at all. Plus his heart condition makes him get tired easily. He also aspirates up to honey thick liquids, but is supposed to be safe for baby food. (I'm not entirely conviced of that, though.) ?Right now we are in feeding therapy to see if we can teach him how to eat. We put baby food on a tray and let him put his fingers in it and rub it around. Maybe if we are really lucky he will lick his hands, but usually he doesn't. I know how hard it is to think that your child can't eat like the rest of us, but if it's in his best interest not to eat, then that's what we have to do. *hugs*
  • 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!

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  • I don't have any advice but just wanted to say I'm sorry to hear that hugs.
  • 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! 

  • Stella is strickly tube fed. It's difficult because right now we are slowly trying to bolus her, but we cannot do large amounts. She's only off the tube for 2 hours a day which really sucks, but it's good for her. She can take about an oz out of a sippy cup now but will only take it if I hold her like a baby. She's 9 mos.  She hates baby food and will choke on it if I give it to her. We are in feeding therapy now but it's a long process. Good luck to you!
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