Hi - We're new to the forum and could really use some help. My 13 year old daughter was diagnosed with Crohn's disease via endoscopy & colonoscopy with biopsies.
She was admitted to the hospital last Friday for EN via NG tube, after a failed attempt at drinking OTC shakes at home. The plan was to insert the NG tube each evening, use a pump to give her 2000ml of Peptamen 1.0 over a 12 hour period, and for her to remove the tube every morning before she went to school. She would also have minimal calories from clear liquid/broth/candies.
While in the hospital, the nurses inserted the NG tube the first 2 times and she was able to do it 2 more times before we were discharged. Once she was discharged, she was able to insert the tube the last 2 evenings at home without a problem. However, we ran into a lot of problems tonight and after 2 unsuccessful tries I'm not sure what to do.
So here are my questions/dilemas:
1. We were taught to listen for a swoosh sound using a stethoscope to ensure proper tube placement. Dr. Google said this was the WRONG way to do it - but this is how all the nurses did it too - no x-rays, no acid tests, etc. Usually hear bubbling sounds like blowing through a straw into a glass of milk, but tonight heard nothing after each attempt.
2. We weren't told what kind of lubricating jelly to use so I bought Vaseline (petroleum jelly.) Again Dr. Google said this was WRONG because it wasn't water soluble and aspirating it was dangerous.
3. After her 2nd attempt inserting the tube tonight, my daughter asked me to check the back of her throat to see if I could see the tube, as she was able to see it in the mirror at the hospital. It definitely wasn't there. She inserts approx. 21" of the 36" tube. Where did it go? Could it go up into her sinuses? She had her head bent down into her chest and she was drinking water like she was taught at the hospital. FYI - at this point she was very upset and crying really hard so we didn't try again.
After the 2nd attempt, I tried sucking up stomach acid (even though we weren't taught this method and I didn't really know what I was doing. 2 of 8??? nurses just randomly mentioned it but said it wasn't the best choice.) I could barely pull the plunger back to 20ml on the huge syringe from the medical company (60 mL total). And what little fluid came through looked like clear snot/saliva.
I don't want to give up on EN but I don't know what to do and I no longer feel safe with what we were taught thanks to Dr. Google. Also, being that she's 13 and her height and weight both dropped 50/25 percentile points in the last 12-18 months I REALLY don't want to give up. Her window of puberty & growth is very quickly closing and she's barely over 5' tall. (She use to be 75th/50th percentile for height & growth all of her life.)
She's also on 9mg of Entocort daily, starting 10 days ago.
Any suggestions, advice, etc. would be GREATLY appreciated! Now that we've done 6 days of EN I don't want it to be for nothing by putting her back on solid food.
Thanks (& sorry this is so long)!!!
Soph's mom
She was admitted to the hospital last Friday for EN via NG tube, after a failed attempt at drinking OTC shakes at home. The plan was to insert the NG tube each evening, use a pump to give her 2000ml of Peptamen 1.0 over a 12 hour period, and for her to remove the tube every morning before she went to school. She would also have minimal calories from clear liquid/broth/candies.
While in the hospital, the nurses inserted the NG tube the first 2 times and she was able to do it 2 more times before we were discharged. Once she was discharged, she was able to insert the tube the last 2 evenings at home without a problem. However, we ran into a lot of problems tonight and after 2 unsuccessful tries I'm not sure what to do.
So here are my questions/dilemas:
1. We were taught to listen for a swoosh sound using a stethoscope to ensure proper tube placement. Dr. Google said this was the WRONG way to do it - but this is how all the nurses did it too - no x-rays, no acid tests, etc. Usually hear bubbling sounds like blowing through a straw into a glass of milk, but tonight heard nothing after each attempt.
2. We weren't told what kind of lubricating jelly to use so I bought Vaseline (petroleum jelly.) Again Dr. Google said this was WRONG because it wasn't water soluble and aspirating it was dangerous.
3. After her 2nd attempt inserting the tube tonight, my daughter asked me to check the back of her throat to see if I could see the tube, as she was able to see it in the mirror at the hospital. It definitely wasn't there. She inserts approx. 21" of the 36" tube. Where did it go? Could it go up into her sinuses? She had her head bent down into her chest and she was drinking water like she was taught at the hospital. FYI - at this point she was very upset and crying really hard so we didn't try again.
After the 2nd attempt, I tried sucking up stomach acid (even though we weren't taught this method and I didn't really know what I was doing. 2 of 8??? nurses just randomly mentioned it but said it wasn't the best choice.) I could barely pull the plunger back to 20ml on the huge syringe from the medical company (60 mL total). And what little fluid came through looked like clear snot/saliva.
I don't want to give up on EN but I don't know what to do and I no longer feel safe with what we were taught thanks to Dr. Google. Also, being that she's 13 and her height and weight both dropped 50/25 percentile points in the last 12-18 months I REALLY don't want to give up. Her window of puberty & growth is very quickly closing and she's barely over 5' tall. (She use to be 75th/50th percentile for height & growth all of her life.)
She's also on 9mg of Entocort daily, starting 10 days ago.
Any suggestions, advice, etc. would be GREATLY appreciated! Now that we've done 6 days of EN I don't want it to be for nothing by putting her back on solid food.
Thanks (& sorry this is so long)!!!
Soph's mom