4 ER Visits and Countless agonizing moments later….I finally listened to Nathan.

Last Thursday marked our 4th urgent visit to ER because of complications with Nathan’s g-tube. A week after he got it he pulled it out. Then we got a defective tube that landed us back. Next we accidentally used the balloon port for medicine, and finally last week he pulled it out. The journey with the Gtube has been wrought with difficulty, pain, and discomfort. Nathan’s been very unhappy, not himself, and not tolerating feeds. In the meantime we’ve been stuck in countless loops as GI doesn’t know what to do, Surgery doesn’t know what to do, his doctor wants us to feed him all night long which means he wont’ sleep, and nobody wants to take responsibility.

This Saturday I finally said, Enough is Enough and started feeding him by mouth again. And lo and behold, he ate and ate and ate! He’s been eating like a champ for the past several days. We continue giving him liquids through the tube as that’s where he is at aspiration risk, but pureed and soft foods are okay for him to eat.

He hasn’t gained weight yet, in fact he’s lost a pound since this journey started. In 3 weeks we’re heading back in for hip surgery. I’m hoping he’ll continue to eat by mouth. Then we’ll augment his feeds with one night time feed, and continue hydrating him through the tube.

What a journey this has been!


  1. There are so many people who love the feeding tube and get so much out of it, but we were never that family! Charlie hated being tube-fed and cried, and cried the entire time. I guess our kids are just letting us know what they need, right?

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