Any tips for kicking the dependency on the tube?


(Sam Saffron) #1

One constant we have had ever since we started treatment 5 months ago has been the nasogastric tube. Initially we got it to help with meds (when we started treatment we needed blood pressure meds and anti nausea meds regularly). But as time passed we became more and more dependant on getting most of the nutrition via ng.

This is totally normal for a 3 year old being treated for high risk NB, especially under SIOPEN where you receive chemo every 10 days and are not given enough time to recover between rounds.

We have just finished transplant :dancer: :fireworks: and are now back at home.

We are starting to think about how to shake the tube and ideally get a bit of a break from it prior to radiation treatment in day 65.

  • Has anyone got any tips about how they managed to transition off tube feeding?

  • Is there any less noisy machine out there? At hospital the Coviden Kangaroo is not too bothersome, but at home it is just so annoying and loud. (even though it is very unlikely we will get a different machine, I am still curious to know if any are silent)

We are not planning on trying anything for a few more weeks cause Shalev’s taste buds are totally messed up after transplant, but we expect them to come back in a few weeks and then we can start thinking about it. We use the NG tube all through the night from about 7pm to 8am.


#2

My brother was on a tube for a few months following a Traumatic Brain Injury. It was a different situation, they were concerned about him swallowing correctly, In the beginning he was only allowed ice chips and water, because if he choked on it the body would absorb the liquid without major problems. Then they had to work him up to normal food, starting with chopped in a food processor, gradually he was able to eat enough to meet his calorie needs and they removed the stomach tube. All of this was happening when he was still in the rehab facility though. He eagerly ate anything they would put in front of him including chopped fish filet with a side of chopped peas and cheese salad.