who should help with this?

[Kristina1]

When you are working with interdisciplinary providers, how do you know who should be the one to provide a particular thing?

Sorry this is long...

My issue currently is with the new PEG tube. When I was discharged from the hospital the case manager said someone would arrive same day at my house to deliver 2 weeks worth of formula and supplies and that after that "home health care" would take over. I knew I had a nutritionist scheduled for 2 weeks later as well so I thought I would ask her if I hadn't heard from anyone else.

So then a week ago I got a call from the nutritionist saying she is canceling my appointment because the nutritionist from the home health care team will be taking my case. An hour later that nutritionist calls me, introduces herself and leaves her contact number. She said she'd be seeing me "soon." I meant to ask her how or when but somehow didn't manage it and we hung up.

I have no idea who or what "home health care" is. I'm kind of mystified. And now I'm discovering that feeds in the tube are too fast and make me feel sick. I need them slower, modulated. So I want to get some gravity feeding bags, but now I don't know who to ask. Do I call the new nutritionist? Ask the neuro/team from ALS clinic? Ask the GI doctor who did the tube?

 

[Nikki J]

It may vary with the system you are in but with my sister the answer was the nutritionist. Worst case you call and the person says no call so and so.

What are you doing now? are you looking for the bag to have rate control? At least consider using a pump. It worked really well for my sister and is very easy to learn. My sister had insisted on gravity bags to start but the pump allows more finetuning if you are having trouble tolerating

 

[Kristina1]

The hospital nutritionist had explained gravity bags to me but not a pump. I don't know what the pump is?

Right now I take the syringe plunger out of the syringe, pour the formula into the syringe, and let it go down by gravity (refill about 4x to get 8-10oz down). It fills my stomach too fast and really bothers me unless I pour only a little at a time and take long pauses before pouring more. But that is a cumbersome process. I'd like to "set it and forget it" in a gravity bag where I could watch 30 min of TV while it drips in at a slower, more comfortable rate.

 

[Nikki J]

Have you ever had an iv in the hospital where it was on a pump that infused your iv or iv medicine at a set rate? Same principle and you don't have to guess and fiddle with the control.

 

[pittsburghgal]

Kristina, I think you might do much better with the feedings if you were given a pump. We have a Kangaroo Joey pump. The tubing from the feeding bag is connected to the pump which can be precisely set as to how fast the food is released into your PEG tube.

My husband is unable to tolerate the Jevity going into his PEG tube quickly and we now use the pump at a very slow rate (75 cc/hour) which has made him much more comfortable. It sounds like gravity feedings are much too fast for you.

I contacted the nutritionist that we met at the ALS clinic and she was helpful in working this out for my husband.

Sharon

 

[Kristina1]

Thanks, the pump being the same idea as an IV pump makes perfect sense. I will ask the nutritionist about it. I called her this morning and she is going to come by.