{"id":9118,"date":"2018-12-14T16:33:28","date_gmt":"2018-12-15T00:33:28","guid":{"rendered":"http:\/\/grace-filled.net\/?p=9118"},"modified":"2018-12-14T16:33:28","modified_gmt":"2018-12-15T00:33:28","slug":"7-quick-takes-g-tube-questions-edition","status":"publish","type":"post","link":"http:\/\/grace-filled.net\/?p=9118","title":{"rendered":"7 Quick Takes: G-Tube Questions Edition"},"content":{"rendered":"<p><center><img decoding=\"async\" src=\"http:\/\/grace-filled.net\/7qt.jpg\" alt=\"7 Quick Takes\" \/><\/center><\/p>\n<p>Daniel has had his G-tube for four months now, so I thought I would answer some of the questions I have gotten from people about it.<\/p>\n<p style=\"text-align: center; font-size: 130%;\"><a name=\"qt1\"><\/a><strong><a href=\"#qt1\" style=\"color: black; text-decoration: none;\">&#8212; 1 &#8212;<\/a><\/strong><\/p>\n<p><strong>How easy is it to change the tube?<\/strong> I have only done one change (November 9th, three months post-surgery), and I had a nurse giving me instructions. Having said that, it took maybe 5 minutes at most. It is held in place with a balloon under the skin that has 6 ml of water in it. To change it, we draw the water out with a syringe, pull the tube out, put a new tube in (that has been lubricated), and then refill the balloon with 6 ml of new water. Insurance only pays for four tubes per year, so this is a quarterly occurrence at most.<\/p>\n<p style=\"text-align: center; font-size: 130%;\"><a name=\"qt2\"><\/a><strong><a href=\"#qt2\" style=\"color: black; text-decoration: none;\">&#8212; 2 &#8212;<\/a><\/strong><\/p>\n<p><strong>What does it look like?<\/strong> This is the closed version.<\/p>\n<p><img decoding=\"async\" src=\"http:\/\/grace-filled.net\/wp-content\/uploads\/20180815_183547.jpg\" alt=\"Daniel's G-tube\" \/><\/p>\n<p>This is open:<\/p>\n<p><img decoding=\"async\" src=\"http:\/\/grace-filled.net\/wp-content\/uploads\/20180815_183613.jpg\" alt=\"Daniel's G-tube open.\" \/><\/p>\n<p>This is with the feeding extension in place:<\/p>\n<p><img decoding=\"async\" src=\"http:\/\/grace-filled.net\/wp-content\/uploads\/20180815_183637.jpg\" alt=\"Daniel's G-tube with the feeding extension in place.\" \/><\/p>\n<p style=\"text-align: center; font-size: 130%;\"><a name=\"qt3\"><\/a><strong><a href=\"#qt3\" style=\"color: black; text-decoration: none;\">&#8212; 3 &#8212;<\/a><\/strong><\/p>\n<p><strong>Does it gross you out to have to work with it?<\/strong> Not really. After 9 1\/2 years of being Daniel&#8217;s mom, I&#8217;m used to bodily fluids.  The only really gross part (for me, at least) is when scabby material builds up around it (stomach contents and stuff), and scabs don&#8217;t freak me out. Even if it did gross me out, I&#8217;d have to suck it up because I&#8217;m his parent and have to take care of him.<\/p>\n<p style=\"text-align: center; font-size: 130%;\"><a name=\"qt4\"><\/a><strong><a href=\"#qt4\" style=\"color: black; text-decoration: none;\">&#8212; 4 &#8212;<\/a><\/strong><\/p>\n<p><strong>Do your parents help at all?<\/strong> Mom helps me by holding his hands when I&#8217;m having to put ointment on it or when I have to clean around the opening on his abdomen, but I do everything else otherwise. From about Day 2 onward, I had to do feedings in the hospital with nurses watching and helping if needed, so I&#8217;m used to it and maybe have to interact with the tube for 30 seconds per feeding.<\/p>\n<p>If I were to know that I would be gone for a couple days for surgery or something, Mom would learn how to do stuff but her preference is that he would take his calories by mouth. She&#8217;d probably give him milk with heavy whipping cream in it a couple times a day and whatever else he wanted to eat. (He likes strong cheeses like Swiss or sharp cheddar.)<\/p>\n<p style=\"text-align: center; font-size: 130%;\"><a name=\"qt5\"><\/a><strong><a href=\"#qt5\" style=\"color: black; text-decoration: none;\">&#8212; 5 &#8212;<\/a><\/strong><\/p>\n<p><strong>Does he object to you working with it?<\/strong> He doesn&#8217;t like having it manipulated too much (he&#8217;s non-verbal so I don&#8217;t know if it&#8217;s painful or if it&#8217;s a weird sensation), but he&#8217;s fine with me attaching the feeding extension to it. Cleaning around it is probably not comfortable, but he&#8217;s getting better about it.<\/p>\n<p style=\"text-align: center; font-size: 130%;\"><a name=\"qt6\"><\/a><strong><a href=\"#qt6\" style=\"color: black; text-decoration: none;\">&#8212; 6 &#8212;<\/a><\/strong><\/p>\n<p><strong>What do you give him through his tube?<\/strong> There are parents who blend their own foods and places online where you can buy blenderized diet stuff, but I stick to the Boost Kids Essentials 1.5 stuff we were given in the hospital. Insurance pays for everything (his feed bags, feeding extensions, syringes, formula, etc.) so I just call the Home Health department at <a href=\"http:\/\/www.seattlechildrens.org\">Seattle Children&#8217;s Hospital<\/a> when I need more of something. You can get the formula on Amazon.Com as well and a case of it (27 juice boxes) costs around $60.<\/p>\n<p>If I have to, I can also give him medication through his tube. The only medication of his that doesn&#8217;t work that way is his Adderall ER which has to be given by mouth. (The beads in the capsule can&#8217;t be pulverized and the capsule is what does the extended release.) Otherwise, I use a syringe for liquid meds and crush pills up to mix in water to give with the syringe. There&#8217;s even a special port on the feeding extension for medication.<\/p>\n<p style=\"text-align: center; font-size: 130%;\"><a name=\"qt7\"><\/a><strong><a href=\"#qt7\" style=\"color: black; text-decoration: none;\">&#8212; 7 &#8212;<\/a><\/strong><\/p>\n<p><strong>How does the food get into the tube?<\/strong> Some people do syringe feeds, and others use gravity bags (the bag hangs above the opening and you control the droplet rate, letting gravity do the work). <a href=\"http:\/\/www.seattlechildrens.org\">Seattle Children&#8217;s Hospital<\/a> has a pump that we rent on a monthly basis (insurance deals with them directly so I have no idea what the rent is per month), and we use that. It&#8217;s not complicated to use, and I had to learn how to use it without problems before they discharged us from the hospital. (Home Health came and worked with me for an hour before the first hands-on feeding I did.) The formula gets poured into a bolus (the plastic IV bag) and the particular feed bag we use is manufactured for the pump, so it has some special tubing attached that fits into the pump. I can prime it with my fingers if I have to (and do a little bit that way to get the air out of the bolus), but I usually just hold down the prime button on the pump to get it all the way through the tubing before I attach it to Daniel.<\/p>\n<p>For more Quick Takes, visit Kelly at <a href=\"http:\/\/thisaintthelyceum.org\">This Ain&#8217;t The Lyceum<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Daniel has had his G-tube for four months now, so I thought I would answer some of the questions I have gotten from people about it. &#8212; 1 &#8212; How easy is it to change the tube? I have only &hellip; <a href=\"http:\/\/grace-filled.net\/?p=9118\">Continue reading <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1,37,25,7,70],"tags":[],"class_list":["post-9118","post","type-post","status-publish","format-standard","hentry","category-daily-life","category-daniel","category-health","category-memes-and-link-ups","category-parenting-kids-with-special-needs"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_shortlink":"https:\/\/wp.me\/p38xoO-2n4","jetpack_likes_enabled":true,"jetpack_sharing_enabled":true,"_links":{"self":[{"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/posts\/9118","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/grace-filled.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=9118"}],"version-history":[{"count":1,"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/posts\/9118\/revisions"}],"predecessor-version":[{"id":9122,"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/posts\/9118\/revisions\/9122"}],"wp:attachment":[{"href":"http:\/\/grace-filled.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=9118"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/grace-filled.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=9118"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/grace-filled.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=9118"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}