{"id":5564,"date":"2011-02-10T21:18:28","date_gmt":"2011-02-11T03:18:28","guid":{"rendered":"https:\/\/www.thepickyapple.com\/blog\/?p=5564"},"modified":"2011-02-10T21:18:28","modified_gmt":"2011-02-11T03:18:28","slug":"feeding-tube-awareness-week-the-details","status":"publish","type":"post","link":"https:\/\/www.thepickyapple.com\/blog\/2011\/02\/10\/feeding-tube-awareness-week-the-details\/","title":{"rendered":"Feeding Tube Awareness Week: The Details"},"content":{"rendered":"

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In case you missed, it please check out Our Story<\/a> to find out why The Littlest Apple has a g-tube.<\/p>\n

Today I want to share some of the details about what it’s like to have a g-tube.<\/p>\n

What it looks like<\/span><\/p>\n

I debated whether I wanted to share this, but I know so many of our friends have been curious.\u00c2\u00a0 The Littlest Apple is more than happy to show off his button to anyone who asks (and sometimes even when they don’t!).\u00c2\u00a0 I think the button looks like an air valve on a beach ball or pool toy.\u00c2\u00a0 It sticks out a little bit, but when he’s got on a shirt, you can’t even tell it’s there.<\/p>\n

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How does it work?<\/span><\/p>\n

The button stays inflated with water.\u00c2\u00a0 When it’s time to change the button, you use a syringe to take the water out, and the button slides right out.\u00c2\u00a0 Here’s a little illustration I found in the manual that shows the balloon inflated inside the stomach…<\/p>\n

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How often does the button have to be changed?<\/span><\/p>\n

Every 4-6 months.\u00c2\u00a0 Our surgeon told us that we could leave it in until it falls out (I think the stomach acid eats away at the balloon over time…), but we wanted to be proactive about it.\u00c2\u00a0 It would be just our luck to have it fall out in the middle of the grocery store or something.\u00c2\u00a0 We just changed The Littlest Apple’s for the first time over the weekend, and it took less than 10 seconds.\u00c2\u00a0 So easy!\u00c2\u00a0 This is such a cake walk compared to the NG tube changes.<\/p>\n

When do you use it?<\/span><\/p>\n

We use ours only at night, hooked up to a continuous very slow feed (40ml per hour) via feeding pump (see photo below).\u00c2\u00a0 There are some kids who use theirs during the daytime for bolus (gravity) feeds (which wouldn’t work in his case) or carry around a little pump in a backpack, but The Littlest Apple eats orally during the day.<\/p>\n

Feeding Pump<\/span><\/p>\n

Here’s our feeding pump, attached to an IV pole.\u00c2\u00a0 Ours is a Kangaroo Joey.\u00c2\u00a0 We keep it next to The Littlest Apple’s bed.<\/p>\n

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We feed the tubing from the IV bag up through his pajama pants (he has to wear long pants, or his legs would get all tangled in the tubing), taping it at the bottom of his leg and on his undies.<\/p>\n

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Can\/does The Littlest Apple unhook himself from the pump?<\/span><\/p>\n

No.\u00c2\u00a0\u00c2\u00a0 And thankfully, he always remembers that he’s hooked up and doesn’t try to jump down out of bed.\u00c2\u00a0 It can be a huge pain when he decides he needs to go potty again after he’s already been hooked up.\u00c2\u00a0 Then we have to undo everything, untape him, and pause the pump, go potty, come back and do it all over again.\u00c2\u00a0 That’s been happening way too frequently lately.\u00c2\u00a0 And it feels kind of mean to say “No!\u00c2\u00a0 You just went!” when we’re about to pump him full of fluids all night long!<\/p>\n

How many hours do you use the pump at night?<\/span><\/p>\n

About 9 or 9.5 hours.\u00c2\u00a0 (The doctor wanted it to be 12 hours…before he found out that The Littlest Apple doesn’t sleep as much as other kids!)\u00c2\u00a0 The Littlest Apple goes to bed at 8:30, and usually wakes up before 6.\u00c2\u00a0 As much as I’d love to teach him to stay in his room until X o’ clock, we can’t really do that.\u00c2\u00a0 Being pumped full of fluids all night means he REALLY has to to potty first thing in the morning!\u00c2\u00a0 (and sometimes he has to go in the middle of the night).<\/p>\n

What formula do you use?<\/span><\/p>\n

During the day, The Littlest Apple drinks Boost 1.5 (and he still drinks that from a bottle….we’re picking our battles.)<\/p>\n

At night, we experimented with using blenderized meals for about 6 weeks.\u00c2\u00a0 I LOVE knowing exactly what is going in to his formula, and I fully intend to return to blenderized meals at some point.\u00c2\u00a0 BUT, for the next 3 months we’re using the super high calorie Boost 1.5 (the same stuff he drinks during the day) for a “calorie blast” to see how much we can get his weight up during that time period.<\/p>\n

Here’s the 500ml Bag filled with Boost…<\/p>\n

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And here’s the Littlest Apple pretending to be all tucked in and ready for bed (and clearly not happy about it: “Mommy, why haven’t we read stories yet?\u00c2\u00a0 We didn’t sing Twinkle yet!\u00c2\u00a0 Why are the lights still on?!”)<\/p>\n

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Nighty night!<\/p>\n

I’m hoping to squeeze in one more post for Feeding Tube Awareness week, so if you’ve got any questions, now’s the time to ask!<\/strong><\/em><\/p>\n

<\/div>","protected":false},"excerpt":{"rendered":"

In case you missed, it please check out Our Story to find out why The Littlest Apple has a g-tube. Today I want to share some of the details about what it’s like to have a g-tube. What it looks like I debated whether I wanted to share this, but I know so many of […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[71,67,49],"tags":[],"class_list":["post-5564","post","type-post","status-publish","format-standard","hentry","category-gastroparesis","category-medical","category-motherhood"],"_links":{"self":[{"href":"https:\/\/www.thepickyapple.com\/blog\/wp-json\/wp\/v2\/posts\/5564","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.thepickyapple.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.thepickyapple.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.thepickyapple.com\/blog\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.thepickyapple.com\/blog\/wp-json\/wp\/v2\/comments?post=5564"}],"version-history":[{"count":14,"href":"https:\/\/www.thepickyapple.com\/blog\/wp-json\/wp\/v2\/posts\/5564\/revisions"}],"predecessor-version":[{"id":5617,"href":"https:\/\/www.thepickyapple.com\/blog\/wp-json\/wp\/v2\/posts\/5564\/revisions\/5617"}],"wp:attachment":[{"href":"https:\/\/www.thepickyapple.com\/blog\/wp-json\/wp\/v2\/media?parent=5564"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.thepickyapple.com\/blog\/wp-json\/wp\/v2\/categories?post=5564"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.thepickyapple.com\/blog\/wp-json\/wp\/v2\/tags?post=5564"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}