Feeding Tube

Duchenne Muscular Dystrophy
#1

Hi, my nephew is currently in the hospital with pneumonia and has failed a swallowing test and say that is what is contributing to him keep getting pneumonia. So to start they have put a feeding tube through his nose and in 2-3 weeks want to retest.

I have a lot of questions but to start…

  1. Can they taste the food?
  2. How do you make the adjustment when they come home to make it easier on them? Like when you and the rest of the family eat, etc.?
  3. Were you or your child (when they got a feeding tube in stomach) able to go to school? That is the bad thing here is he is in his senior year and very close to graduating.

Any other suggestions or tips would be greatly appreciated because right now we are just lost.

Thank You
Sherry

#2

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#3

Hi Sherry,
I am 32 with DMD and I have a g-tube which was placed in when I was 16. Sorry to hear about your nephew failing the swallowing test. Was this just solid food or liquids too? His swallowing may or may not improve. Most likely your nephew will be getting a g-tube which is easily hidden inside clothing. I have mic-key which is a button and it has an extension. No one at school will even notice he has one. Just curious, how was he eating? Sitting back, reclined, upright or sitting forward? As for the rest of the family eating at the table, I don’t know what kind of advice I can give you. Just be supportive. If his swallowing improves perhaps he could have some pudding, soft soup–sometimes just tasting food satisfies. Food going through the feeding tube I can’t really taste but on occasion I kind of do. I hope this answers your questions.
Jason

“Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.” Proverbs 3:5-6 “A word fitly spoken is like apples of gold in pictures of silver.” Proverbs 25:11

To: violinknight@hotmail.com> From: dmd-cpt7888@lists.careplace.com> Subject: [dmd] Feeding Tube> Date: Sat, 23 Feb 2008 23:13:50 -0500> >