{"id":1029,"date":"2020-08-11T13:00:17","date_gmt":"2020-08-11T17:00:17","guid":{"rendered":"https:\/\/www.calliegolden.org\/blog\/?p=1029"},"modified":"2020-08-11T13:00:17","modified_gmt":"2020-08-11T17:00:17","slug":"tubeless","status":"publish","type":"post","link":"https:\/\/www.calliegolden.org\/blog\/tubeless\/","title":{"rendered":"Tubeless"},"content":{"rendered":"\n

Some of you know we\u2019ve been having difficulties with Callie\u2019s g-tube for almost two months now. And truthfully, it\u2019s been giving us trouble for about a year, but we\u2019ve always managed to find solutions.<\/p>\n\n\n\n

\"\"
Callie with her cat, Gracie, who always stays close by to provide love and support.<\/em><\/figcaption><\/figure><\/div>\n\n\n\n

Last month, after trying different types of tubes, different sizes of tubes, different positioning, and different skincare strategies, it became clear we were out of options. Callie\u2019s scoliosis is so severe the g-tube was being pulled under her rib cage. This was causing her almost constant pain, even though she rarely complained about it. So last week, we had Callie\u2019s g-tube removed. We hope the site will close on its own, but we\u2019ve scheduled surgery for a couple weeks from now in case that doesn\u2019t happen.\u00a0<\/p>\n\n\n\n

We anticipated this — and Callie has been the biggest advocate for getting the tube permanently removed — so Callie has learned to take all her medications by mouth, and she is keeping up with her necessary hydration. Callie even swallows pills whole. I know plenty of adults who don\u2019t swallow pills well, so we were impressed when she learned to time her swallowing to alternate with the back-up respiration rate on her bi-pap so she doesn\u2019t choke.<\/p>\n\n\n\n

This has not been an easy time for any of us. Callie\u2019s g-tube has been one of her critical lifelines over the years. Having access to it has saved her life more than once when she was too sick to take medications by mouth. However, Callie has always faced life with more bravery than we could muster. And she\u2019s faced this situation with the same bravery — she fully understands how important this g-tube has been in her survival, just like she understands surgery puts her life at risk. <\/p>\n\n\n\n

She\u2019s never wavered in her confidence that this is the right path for her life. Nathan and I always make the final call in every aspect of Callie\u2019s medical care, but we also consider her wishes. This decision also has the support of Callie\u2019s medical team at Duke and her palliative team at Brenner\u2019s.   <\/p>\n\n\n\n

Even though Callie has shed a lot of tears over the physical pain she\u2019s been in, she\u2019s maintained her sense of humor throughout this entire ordeal. She and Nathan have a penchant for making up silly lyrics to well-known songs, and one the latest tunes around our house has been \u201canother tube bites the dust.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

We had Callie\u2019s g-tube removed. We hope the site will close on its own, but we\u2019ve scheduled surgery for a couple weeks from now in case that doesn\u2019t happen. <\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_s2mail":"yes","footnotes":""},"categories":[6],"tags":[],"class_list":["post-1029","post","type-post","status-publish","format-standard","hentry","category-health"],"_links":{"self":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/1029","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/comments?post=1029"}],"version-history":[{"count":6,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/1029\/revisions"}],"predecessor-version":[{"id":1037,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/1029\/revisions\/1037"}],"wp:attachment":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/media?parent=1029"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/categories?post=1029"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/tags?post=1029"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}