Seven days. Three hospitals. Four NG tubes.. Nine insertion attempts. Two tubes thrown up. Three different tube styles. Four different tape jobs. Seventeen and a half hours in waiting rooms. One patient, stoic kid.
And this morning, day 10, he threw up the tube again. This wasn’t what we had in mind when we said we were going tubing this summer.
disabledfamilies 
Hi — I thought he was on a g-tube in his stomach?
This sounds horrifying for all of you. As I’ve mentioned, Ben was put on a g-tube as a way of boosting his growth, but he flatlined in the year following its insertion in terms of weight gain and we took it out (much to the anger of our specialist). It wasn’t the right thing for Ben.
In Deane’s case, tube-feeding seems to be the cause of much pain and problems. Has he gained significant weight?
Our kids don’t ever measure up to regular growth charts. It sounds like this intervention is hurting Deane.
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Posted by louise at bloom | August 12, 2013, 11:25 amHe is scheduled for a g-tube in September. The NG tube is a stop-gap measure because he was aspirating fluids and they needed a way to keep he hydrated. According to his doctor’s scale he gained 4 kg in the first month. Haven’t weighed him in the last month. Thanks for the different perspective – I haven’t heard of anyone having a g-tube removed.
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Posted by disabledfamilies | August 19, 2013, 11:29 pmHaving had some experience with N-G tubes in June, and also three years ago, I can comment on how uncomfortable they can be! It’s an extremely uncomfortable feeling in the nose and throat; also it makes talking very uncomfortable. Thank goodness I managed to get through both episodes, but it was because I clearly understood that I should be stoic and resist the impulse to rip out the tube. Am fine now.
You have my sincere wishes for getting through this episode; and hopefully few or no similar ones in future.
Marion
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Posted by Marion | August 13, 2013, 12:32 amThanks for comment. As much as I can sympathize with the awful feeling of something going down my throat if you have never had to live with one you can’t really understand how frustrating and uncomfortable it must be. Luckily Deane is an incredibly patient guy and has not pulled any of the tubes out. Everyone who has been through it tells me a g-tube – which he is scheduled to get in September – is much better for everyone. I hope so. I really appreciate the insight and glad you are better now.
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Posted by disabledfamilies | August 19, 2013, 11:24 pm