{"id":977,"date":"2013-04-22T10:39:04","date_gmt":"2013-04-22T15:39:04","guid":{"rendered":"http:\/\/blogs.bu.edu\/relwy\/?p=977"},"modified":"2013-04-22T10:39:04","modified_gmt":"2013-04-22T15:39:04","slug":"bens-road-traveled","status":"publish","type":"post","link":"https:\/\/blogs.bu.edu\/relwy\/2013\/04\/22\/bens-road-traveled\/","title":{"rendered":"Ben&#8217;s Road Traveled"},"content":{"rendered":"<p><em>Two roads diverged in a wood, and I,<br \/>\nI took the one less traveled by,<br \/>\nAnd that has made all the difference.<br \/>\n                        &#8211;Robert Frost<\/em><\/p>\n<p>It\u2019s been 18 days since Ben\u2019s surgery at <a href=\"http:\/\/www.childrenshospital.org\/\">Boston Children\u2019s Hospital<\/a>, which involved attaching titanium rods to his T1 and T12 vertebrae to create tension to straighten his thoracic spine. By all accounts, and despite some unexpected issues with Ben\u2019s bones, the <a href=\"http:\/\/www.childrenshospital.org\/az\/Site1064\/mainpageS1064P0.html\">surgery<\/a> was spectacularly successful. Ben\u2019s scoliosis has been dramatically reduced from 75 to 25 degrees, and this improvement should become greater with every successive spine surgery he has, every 6-9 months, as the rods are extended to allow for spine growth and the tension to straighten the vertebrae increases. <div id=\"attachment986\" style=\"width: 310px\" class=\"wp-caption alignleft\"><a href=\"http:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-with-sisters-0413.jpg\"><img aria-describedby=\"caption-attachment986\" loading=\"lazy\" src=\"http:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-with-sisters-0413-300x225.jpg\" alt=\"\" title=\"Ben&#039;s sisters visiting in ICU, April 5, 2013\" width=\"300\" height=\"225\" class=\"size-medium wp-image-986\" srcset=\"https:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-with-sisters-0413-300x225.jpg 300w, https:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-with-sisters-0413-1024x768.jpg 1024w, https:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-with-sisters-0413.jpg 1280w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/a><p id=\"caption-attachment986\" class=\"wp-caption-text\">Ben&#039;s sisters visiting in ICU, April 5, 2013<\/p><\/div><\/p>\n<div id=\"fb-root\"><\/div>\n<p><script>(function(d, s, id) {\r\n  var js, fjs = d.getElementsByTagName(s)[0];\r\n  if (d.getElementById(id)) return;\r\n  js = d.createElement(s); js.id = id;\r\n  js.src = \"\/\/connect.facebook.net\/en_US\/all.js#xfbml=1\";\r\n  fjs.parentNode.insertBefore(js, fjs);\r\n}(document, 'script', 'facebook-jssdk'));<\/script><\/p>\n<p>To say the words \u201cspectacularly successful\u201d following any of Ben\u2019s surgeries is a wish I never allow myself. My coping strategy is to prepare for the worst, and then be pleasantly surprised if that doesn\u2019t occur. But the best? I <em>never<\/em> prepare for that.<\/p>\n<p>What\u2019s been even more spectacular is Ben\u2019s rapid recovery.  Each surgery is a road newly traveled for us; it\u2019s impossible to know what to expect, because no surgeon, anywhere, is able to tell us \u201cwell, on the last 20 children with <a href=\"http:\/\/www.rarediseases.org\/rare-disease-information\/rare-diseases\/byID\/1058\/viewAbstract\">Schwartz-Jampel syndrome<\/a> that I performed this surgery on, this is what it was like\u201d. Because there aren\u2019t enough people with SJS to know this. Because not one physician that Ben sees has another patient with his same condition. I can\u2019t say that every child with SJS would recover from spinal growing rod surgery as well as Ben, but at least it\u2019s one data point.<\/p>\n<p>So each significant surgery is novel, because it\u2019s done on Ben. It\u2019s risky, it feels like an experiment, and the outcomes are largely unknown because Ben is the guinea pig. Only 8 days before the surgery, because I took Ben to see his hip surgeon, the spine surgeon and hip surgeon started discussing the growing rod impacts on Ben\u2019s hips. The hip surgeon and the physical therapist thought that the rods should not be extended into the lumbar spine, because then Ben would no longer be able to sit. Only 2 days before the surgery, our extended team made a definitive plan that only the thoracic spine would be operated on, a lumbar brace would likely be needed to address this part of the scoliosis that isn\u2019t being treated, that when Ben is between 16-18 years old he should undergo a total hip replacement, which would give him enough flexibility in his hips to sit once the lumbar spine was fused with the thoracic spine, following the hip replacement.<div id=\"attachment988\" style=\"width: 235px\" class=\"wp-caption alignright\"><a href=\"http:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-growing-rods-0413.jpg\"><img aria-describedby=\"caption-attachment988\" loading=\"lazy\" src=\"http:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-growing-rods-0413-225x300.jpg\" alt=\"\" title=\"Ben&#039;s growing rods\" width=\"225\" height=\"300\" class=\"size-medium wp-image-988\" srcset=\"https:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-growing-rods-0413-225x300.jpg 225w, https:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-growing-rods-0413-768x1024.jpg 768w, https:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-growing-rods-0413.jpg 960w\" sizes=\"(max-width: 225px) 100vw, 225px\" \/><\/a><p id=\"caption-attachment988\" class=\"wp-caption-text\">Ben&#039;s growing rods<\/p><\/div><\/p>\n<p>It was a 6 month conversation condensed into a few days. It felt very uncomfortable, but at least it happened.<\/p>\n<p>Our road traveled has led to us becoming more insistent that doctors talk to one another, as was amplified during Ben\u2019s hospital stay. When blood-tinged mucous started coming out of his trach during post-op suctioning, something that had only happened twice before, I insisted that Ben\u2019s <a href=\"http:\/\/www.childrenshospital.org\/clinicalservices\/Site2149\/mainpageS2149P0.html\">otolaryngologist<\/a> (ORL\/ENT) doctor be called. When Ben\u2019s breathing became rapid and fierce, I called his <a href=\"http:\/\/www.childrenshospital.org\/clinicalservices\/Site1938\/mainpageS1938P0.html\">pulmonologist<\/a> directly, to bypass the critical care team who wanted to handle it all by themselves. When the pulmonologist and ORL docs, who have been caring for Ben for nearly 11 years, visited him in the ICU, the attending said, \u201cI didn\u2019t know Ben had so many friends\u201d. Yes, they feel like friends, but more importantly, they know his baseline, what our family is capable of, and they can judge his decline and his recovery needs in a more accurate way as a result of this knowledge. Why <em>not<\/em> bring them into the picture?<\/p>\n<p>I teach a session on <a href=\"http:\/\/www.ahrq.gov\/research\/findings\/nhqrdr\/nhqr11\/chap6.html\">care coordination<\/a> in my PM755 class to <a href=\"sph.bu.edu\">BU School of Public Health<\/a> students, most of whom are working towards their MPH. It\u2019s a class where I introduce Ben\u2019s needs and our family.  I first tell the students about the goals of care coordination, why it is needed and the innovations that exist as part of the <a href=\"http:\/\/www.hhs.gov\/news\/press\/2011pres\/06\/20110606a.html\">Affordable Care Act<\/a>. But then I need to introduce them to reality, and examples like the one above illustrate my point. My goal is not to make every parent, sister, son, daughter, brother a patient advocate (although that would help); my goal is to illustrate all the reasons why care coordination is such a difficult concept to achieve, even in our nation\u2019s best hospitals.<div id=\"attachment990\" style=\"width: 310px\" class=\"wp-caption alignleft\"><a href=\"http:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-with-mustache-0413.jpg\"><img aria-describedby=\"caption-attachment990\" loading=\"lazy\" src=\"http:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-with-mustache-0413-300x225.jpg\" alt=\"\" title=\"Having a little hospital fun\" width=\"300\" height=\"225\" class=\"size-medium wp-image-990\" srcset=\"https:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-with-mustache-0413-300x225.jpg 300w, https:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-with-mustache-0413-1024x768.jpg 1024w, https:\/\/blogs.bu.edu\/relwy\/files\/2013\/04\/ben-with-mustache-0413.jpg 2048w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/a><p id=\"caption-attachment990\" class=\"wp-caption-text\">Having a little hospital fun<\/p><\/div><\/p>\n<p>Ben\u2019s future now involves traveling down a 5-7 year road of repeat spine surgeries for extending the rods (Ben hopes for every 9 instead of 6 months), and once he is no longer growing, a total hip replacement, followed by a <a href=\"http:\/\/www.childrenshospital.org\/clinicalservices\/Site1171\/mainpageS1171P11.html\">definitive fusion<\/a> of the thoracic and lumbar spine. But we can\u2019t take our eyes off Ben\u2019s knees, elbows, wrists and eyes, and as always, his respiratory status is vulnerable and needs our attention too. <\/p>\n<p>High school will have some ups and downs, for certain. But right now, we\u2019re looking forward to getting Ben back to middle school, where he can finish up a fantastic 6th grade year, return to the band, and hang out with his friends. We are so thankful that his recovery road, this time, is so much shorter than any of us, including his surgeons, imagined.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. &#8211;Robert Frost It\u2019s been 18 days since Ben\u2019s surgery at Boston Children\u2019s Hospital, which involved attaching titanium rods to his T1 and T12 vertebrae to create tension to straighten his thoracic spine. By [&hellip;]<\/p>\n","protected":false},"author":2966,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[2970,500,11811,5171],"tags":[252,11815,7587],"_links":{"self":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts\/977"}],"collection":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/users\/2966"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/comments?post=977"}],"version-history":[{"count":17,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts\/977\/revisions"}],"predecessor-version":[{"id":998,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts\/977\/revisions\/998"}],"wp:attachment":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/media?parent=977"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/categories?post=977"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/tags?post=977"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}