ausEE Inc.

a charity dedicated to improving lives affected by an eosinophilic disease

Tube Feeding Blog

All systems go!

Posted on June 10, 2011 at 10:05 AM

Yesterday was the first day of the rest of our lives! I feel like a weight has been lifted off our shoulders and the pressure is finally off Bella to maintain her intake and it comes with such a sense relief to us all. I guess you can tell that all went well yesterday at the RCH… Once the anguish around having the plaster tape removed (there was about 4 layers of it after all!) we went up to a ward for the rest of the day and the nurses assisted me with carrying out a first feed with our infinity pump. I love our infinity pump! It is so simple to use and the tube feeding process wasn’t nearly as complex as I had expected it to be nor is the button maintenance that is required. She was fitted with a bard button device and it is stitched in place so no rotating is needed and it should be ok for the next 6 months or so – which will fit in nicely for a button change when she is due for her next endoscopy. (Bard button changes need to be done under general anaesthetic).

When we came home last night I set up 2 lots of 4 hour feeds during the night and all went smoothly so it’s all systems go from here. We’ll increase feed volume gradually over the next week to get to her goal intake which is 960ml of normal strength Neocate advance daily (based on the advice from hospital dietitian). We will monitor her weight gain as she may require more if she isn’t eating enough of her safe foods orally during the day. Stay tuned as this new feeding journey begins for Bella, who has coped remarkably well so far; such is my brave little (soon to be bigger) girl.

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