{"id":3677,"date":"2025-11-13T13:22:47","date_gmt":"2025-11-13T16:22:47","guid":{"rendered":"https:\/\/hopeforgabriel.com\/13-11-2025\/"},"modified":"2025-12-20T09:28:31","modified_gmt":"2025-12-20T12:28:31","slug":"13-11-2025","status":"publish","type":"post","link":"https:\/\/hopeforgabriel.com\/en\/13-11-2025\/","title":{"rendered":"13\/11\/2025"},"content":{"rendered":"\n<p>Hello, son,<\/p>\n\n<p>Today I&#8217;m late. It&#8217;s 12:27 PM, this morning was a rush.<br\/>Dad is finishing an e-commerce website project for a lady who sells clothes online.<br\/>We need to launch the site on Saturday, so it&#8217;s a last-minute rush while juggling specialists who visit us all day long. <\/p>\n\n<p>The last time I wrote to you, I was depressed.<\/p>\n\n<p>Depression is a bitch. When it gets you, you have to do the opposite of what it tells you.<br\/>It tells you to drink. You do an alcohol-free fast for thirty days.<br\/>It tells you to sleep and do nothing. You put on your shoes and run up the twenty-one floors of the building via the stairs.<br\/>It tells you to eat pizza. Eat your pizza.<br\/>That&#8217;s what your dad does. I&#8217;m far from perfect, haha.<br\/>And when your brain is overflowing with crap, go see a therapist and don&#8217;t talk about it too much with loved ones, because darkness is contagious and your loved ones don&#8217;t deserve that.     <\/p>\n\n<p>I&#8217;m trying to think differently so we can get out of this situation. We have leads, we&#8217;re exploring them. I really think we&#8217;re going to make it.<br\/>But we need strength, so we&#8217;re holding on&#8230;  <\/p>\n\n<p>I was telling your mom yesterday that this life is like managing a new business.<br\/>We manage staff, egos, problems with &#8220;suppliers&#8221; who do their job poorly, etc. etc..<br\/>The difference is that with your mom, this isn&#8217;t our first business, and we don&#8217;t think like employees.<br\/>We&#8217;re seasoned at all this, even if we each have our own style. <br\/>The hardest part now is managing the emotional pain.<br\/>And for that, there&#8217;s sports, pizza, and sometimes crying does good too.<\/p>\n\n<p>This morning, after working on the e-commerce site, trying to soothe you, giving you your bath, your medication, having my breakfast discussing doctors with your mom, and running up twenty-one flights of stairs until I was gasping for air to get a glimpse of your respiratory suffering\u2026 I came back and there were five people at our home.<br\/>Your mom&#8217;s efforts are bearing fruit. People are trying to help us. It will take months, but the movement is starting. The train is pulling out of the station; once it&#8217;s at full speed, I hope some will feel its impact&#8230;   <\/p>\n\n<p>Then there was the gastroenteritis that we obviously paid for out of pocket, because the organization refused.<br\/>And then, my son, we got a double whammy.<\/p>\n\n<p>From the beginning, we&#8217;ve been saying that you have reflux and that it affects your breathing.<br\/>The doctors scoff at us.<br\/>And this little stomach flu comes along, lays out a paper, and explains the whole mechanism in a diagram.<\/p>\n\n<figure class=\"wp-block-image size-large is-resized\"><img fetchpriority=\"high\" decoding=\"async\" width=\"768\" height=\"1024\" src=\"https:\/\/hopeforgabriel.com\/wp-content\/uploads\/2025\/11\/bronchiolite-obliterante-reflux-768x1024.jpg\" alt=\"obliterative bronchiolitis reflux\" class=\"wp-image-3670\" style=\"width:360px;height:auto\" srcset=\"https:\/\/hopeforgabriel.com\/wp-content\/uploads\/2025\/11\/bronchiolite-obliterante-reflux-768x1024.jpg 768w, https:\/\/hopeforgabriel.com\/wp-content\/uploads\/2025\/11\/bronchiolite-obliterante-reflux-225x300.jpg 225w, https:\/\/hopeforgabriel.com\/wp-content\/uploads\/2025\/11\/bronchiolite-obliterante-reflux-rotated.jpg 1050w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/><\/figure>\n\n<p>\n          <strong>Simplified explanation:<\/strong>\n        <\/p>\n\n<ul class=\"wp-block-list\">\n<li>Obliterative bronchiolitis causes air to remain trapped in the lungs (air trapping).<\/li>\n\n\n\n<li>The chest and abdomen work much harder to aid breathing and expel air (strong retraction).<\/li>\n\n\n\n<li>This effort increases pressure on the stomach and facilitates reflux.<\/li>\n\n\n\n<li>Babies up to two years old already have a higher risk of reflux because their esophageal sphincter is still immature.<\/li>\n\n\n\n<li>As a bonus, your nasogastric tube keeps the sphincter more open, which worsens reflux.<\/li>\n\n\n\n<li>When acid comes up and irritates the esophagus, the vagus nerve activates.<\/li>\n\n\n\n<li>The vagus nerve triggers a laryngobronchial reflex.<\/li>\n\n\n\n<li>The glottis closes, the bronchi contract, and this causes bronchospasm.<\/li>\n<\/ul>\n\n<p>It&#8217;s a bit like when a car part starts causing problems; little by little, it causes problems elsewhere, and if you let it go, well, boom!<\/p>\n\n<p>I just explained it in its own terms, but we&#8217;ve been trying to describe this phenomenon to doctors for months, and no one knew about it&#8230; <\/p>\n\n<p>I shed a tear listening to her, and when she left, I broke down.<\/p>\n\n<p><strong>The solutions now: <\/strong>(for those who might stumble upon this blog via a search one day)<\/p>\n\n<p>Increase your Esio medication from 3.5 ml in the morning to 7 ml morning and evening.<br\/>And if that doesn&#8217;t work, unfortunately, consider gastrostomy with anti-reflux surgery.<\/p>\n\n<p>Gastrostomy (if possible by video) is a small opening in the stomach to place a tube in your belly.<br\/>This allows you to be fed without going through the esophagus.<br\/>This avoids the nasal tube which opens the sphincter and increases reflux.<\/p>\n\n<p>In parallel, she says it would be good for you to have anti-reflux surgery (Nissen fundoplication).<br\/>It&#8217;s an anti-reflux surgery where the upper part of the stomach is wrapped around the lower esophagus to strengthen the sphincter and prevent acid from coming up.<br\/>It is often done at the same time as gastrostomy when reflux is very severe, causing apneas, bronchospasms, irritations, when medications are no longer sufficient, and when the child has a chronic lung disease.<\/p>\n\n<p>\n          <strong>What do we think?<\/strong>\n        <\/p>\n\n<p>Just as we didn&#8217;t want a tracheotomy, we wanted to avoid this gastrostomy, because no parent wants to see a button on their child&#8217;s belly that leads directly to their stomach.<\/p>\n\n<p>But we&#8217;ll think about it; I believe this operation will help you breathe better and get rid of all the gear you have on your face. And it&#8217;s not for life either&#8230;. Plus, you already have your share of holes and scars. That&#8217;ll make the girls swoon \ud83d\ude09   <\/p>\n\n<p>Now we&#8217;re afraid of the conditions under which it would be performed.<\/p>\n\n<p>The gastroenterologist recommended that we never return to the organization&#8217;s hospitals.<br\/>It&#8217;s &#8220;funny&#8221; because no doctor, not even those who worked there, considers these places safe.<br\/>It&#8217;s absurd that this entity still exists.<br\/>If there&#8217;s karma, some will pay sooner or later, like the miserable cockroaches they are.<\/p>\n\n<p>The stomach flu also reminded us of the importance of protecting you as much as possible.<br\/>No visits from sick individuals.<br\/>Every visit requires a mask, gown, and gloves if there&#8217;s contact.<br\/>A shower is mandatory if leaving the house.<br\/>And for external medical appointments, if possible, you should be the first patient seen to avoid infection risks.<\/p>\n\n<p>Finally, cherry on top, she looked at the last X-ray of your gastric tube that was placed on 09\/22 before you left the hospital. According to her, the position is very borderline and could probably have moved since then. So, she would like you to have an X-ray on Saturday to see if we need to change it&#8230;  <\/p>\n\n<p>\n          <strong>This visit was a relief and also a reminder that the road is still long and steep.<\/strong>\n        <\/p>\n\n<p>Yesterday we had a genetic test done which was recommended by doctors in France, but also by some when you were still in the hospital<\/p>\n\n<p>Some think you might have a genetic problem with your immunity, which could have explained this severe infection. And your great-aunt had a heart and lung transplant for primary pulmonary hypertension, even if it seems unlikely to be genetically transmissible. <\/p>\n\n<p>This test is expensive, and when we asked the insurance for funding, guess what they said?<\/p>\n\n<p>Anyway, we did it ourselves and will wait for the results in thirty days.<\/p>\n\n<p>In the meantime, we&#8217;ll simply increase your Esio dose to see if it improves the situation, and then we&#8217;ll decide whether or not to do this gastrostomy.<\/p>\n\n<p>Always tubes, more tubes&#8230;<\/p>\n\n<p>Son, I think later you&#8217;ll be into music and change the world.<\/p>\n\n<p>\n          <em>(I&#8217;m not sure if the Portuguese and English translation makes sense for this joke.)<\/em>\n        <\/p>\n\n<p>I&#8217;m off to work<\/p>\n\n<p>I love you<\/p>\n\n<p>Dad<\/p>\n\n<p>PS: I might not write tomorrow, or Saturday, focusing on work.<\/p>\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Hello, son, Today I&#8217;m late. It&#8217;s 12:27 PM, this morning was a rush.Dad is finishing an e-commerce website project for a lady who sells clothes online.We need to launch the site on Saturday, so it&#8217;s a last-minute rush while juggling specialists who visit us all day long. The last time I wrote to you, I [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_seopress_robots_primary_cat":"none","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_analysis_target_kw":"","iawp_total_views":2,"footnotes":""},"categories":[29],"tags":[],"class_list":["post-3677","post","type-post","status-publish","format-standard","hentry","category-memoirs-of-a-heros-dad"],"_links":{"self":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/3677","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/comments?post=3677"}],"version-history":[{"count":3,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/3677\/revisions"}],"predecessor-version":[{"id":4911,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/3677\/revisions\/4911"}],"wp:attachment":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/media?parent=3677"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/categories?post=3677"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/tags?post=3677"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}