One of the suggested topics for tube feeding awareness week is what our day looks like. Every tubie's day will look a little different. There are those on continuous feeds like us and others who are bolus feeds (big lots at once rather than little bits constantly). There are some who are continuous over night and bolus in the day. There are some who can take some of their nutrition orally and just need to top up through the tube and those who are reliant on the tube for every bit of nutrition. Tube fed people are babies, toddlers, children, adults and elderly with a vast array of interests and commitments.
For us, this is a "typical day" before we came into hospital this time around:
7:30 ish meds, hang feed, clean up Kaylee (give her a bath depending on how much she vomited overnight), get dressed, express (often takes me about an hour to an hour and a half first thing), grab some breakfast (sometimes Jon makes me poached eggs on toast!) and start schooling for the day.
11:30 hang feed, express, help make lunch, feed the kids and get Andrew and Anna off to bed
1:30 meds, finish any schoolwork not complete, try and get something constructive done (like house work, cooking, paperwork etc.)
3:30 meds, hang feed, express (I often catch a nap while sitting up and expressing), help bring in the washing and fold it, help the kids with the end of the day clean up and get them bathed while Jon cooks tea.
7:30 meds, hang feed, family worship and story time, get the kids off to bed and help Jon clean up from tea
11:30 meds, hang feed (I usually hang a larger volume and add a cooler bag with cooler bricks so it will be safe to leave until morning
Sometime between 12:30 - 1:30am meds
Dotted inbetween that is holding Kaylee if she has reflux, cleaning up any vomit, changing nappies (Kaylee's and Andrew's - although Jon does most of Andrew's!), fitting in Kaylee's various therapies, being a Mum to my other kids, being a wife to that fantastic husband of mine who picks up all the slack and finding time to pee. Some of those meds need to be crushed up, suspended in water then measured out and others I can just draw up. I am hoping when we go home after Kaylee's heart repair we will have significantly fewer med times. Few days actually work out to be typical, but most days we get it all done and Kaylee always gets her feeds and meds.