Saturday, December 14, 2013
Tubie-torials: Now What?
I'm in the mood for a new series...most of this is going to be based off of what I know, have been through and learned, and what I've noticed to be frequent issues for those who are an tube feedings for sole source nutrition.
Before I go much further, I want to put a plug here for two WONDERFUL resources to newbie tubies out there that may be totally lost. The Oley Foundation is and organization that has been in place for some time now, and includes a forum for discussion of tips, trouble shooting, and everything you want to know as a new consumer to tube feeding and/or TPN. Feeding Tube Awareness is sort of the new kid on the block but the individuals that churn this engine are SPECTACULAR, and are a wonderful learning tool for reducing stigma as nutrition via tube or central line as the epitome of illness. I love this organization for the unique feature of their real time Facebook page all about asking questions and getting answers from many others in your shoes, and I benefit as well and have gotten to know people that are nothing short of absolutely wonderful. Both organizations are non-profit and do so much to help reach out to those who are confused, struggling, or wanting to learn more.
This is something weighing on my own heart as I have a lot of friends in this holiday season who struggle with an array of emotions with the loss of ability to eat either completely or only able to take small amounts in the face of others enjoying the bounty of some of the most amazing dishes usually made only for such occasions as celebrating. There is also weighing on minds of loved ones who may feel some guilt about finding enjoyment yet realize that one of their own has been deprived of the same. I think this is an opportunity to educate both those who live with this as well as their close ones to understand the implications as well as spotting the true bright spots of a life altered...and preserved. Which is the most true beauty of what nutrition support has to offer.
Adjusting is not easy in the least for anyone. Child or adult, it is something to be considered in every facet of life: travel, errands, and even storage in the home, school, or office space. There is also the very basic question of:
Most are given a tube and sent home (I am focusing most on tube feeding in this series since my nightmare on TPN was so short and spotty, as well as traumatic, that I do not wish to touch on it but briefly in smaller segments) with a sheet of paper about the method of feeding (gravity, bolus, or pump), type of tube (G, J, or G/J tube), formula name, and a schedule on what rate and for how long.
Many do not know that this is NOT set in stone. For instance, nausea and vomiting is not "normal" or just "part of" tube feeding. Formulas and schedules can be changed, and so can the type of tube, type of pump, or even chucking the pump all together and using a syringe instead if your primary care provider agrees and makes sense in your situation. Some people even blend their own food to put through the tube with wonderful results! This is not a possibility in my situation (I use formula because my body doesn't digest normal food. Strange, but true...), but for many others it is an alternate solution to intolerance of formulas or even improving nutrition status.
Possibilities are literally endless.
So hang tight. I don't "plan" posts, if you've been reading for any length of time you know that there can be bursts of many posts or long lulls in content. Most has to do with wellness and also life...because living is quite nice and spending time with those I care about trumps time on the internet hands down, every time.
Snowing here now...and I get to be home to enjoy it. I'll count that as a solid win. <3