{"id":2474,"date":"2025-08-13T22:12:21","date_gmt":"2025-08-14T01:12:21","guid":{"rendered":"https:\/\/hopeforgabriel.com\/13-08\/"},"modified":"2025-08-13T22:16:02","modified_gmt":"2025-08-14T01:16:02","slug":"13-08","status":"publish","type":"post","link":"https:\/\/hopeforgabriel.com\/en\/13-08\/","title":{"rendered":"13\/08"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Last night, Gabriel was weak. His temperature was low (34.8), as was his pulse ox. We were scared (post-traumatic hypervigilance) because the last time it happened it wasn&#8217;t a good sign (temp 32 at the worst time).  <br\/>This time, an X-ray, blood tests&#8230; and in the end: nothing. So much the better! <\/p>\n\n<p class=\"wp-block-paragraph\">This morning, a doctor came in with a new diagnosis.  <br\/>Different again.  <br\/>Here, medical truths have a shelf life of three days. Then they change.   <br\/>And each time, our hope wavers a little more.<\/p>\n\n<p class=\"wp-block-paragraph\">\n          <strong>1. This time it&#8217;s serious<\/strong>\n        <\/p>\n\n<p class=\"wp-block-paragraph\">A pulmonologist consulted online by the hospital reviewed every X-ray, every CT scan.<br\/>Her verdict: Gabriel&#8217;s bronchiolitis obliterans is serious. Not mild. Not moderate, as we were previously told. Serious.<br\/>So Gabriel has a serious incurable disease today. Thanks guys!<br\/>After 4 months, it&#8217;s heartwarming.<br\/>She therefore recommends that the hospital increase some of the Pulmicort treatments.<br\/>Note that she hasn&#8217;t even seen Gabriel on video&#8230;. <br\/>While we ask for a consultation with the pulmonologist who follows him physically&#8230; But on the face of it, that&#8217;s not possible.<br\/>Common sense doesn&#8217;t exist.     <\/p>\n\n<p class=\"wp-block-paragraph\">\n          <strong>2. Pulsotherapy<\/strong>\n        <\/p>\n\n<p class=\"wp-block-paragraph\">The third pulsotherapy, scheduled for August 25, will depend on its progress.<br\/>But the discourse is constantly changing: first necessary, then no, then yes, then no again, tomorrow it will be yes, we bet?<br\/>Each turnaround is like a punch in the stomach: we no longer know who to trust and we no longer believe anyone.<br\/>Some doctors even tell us not to listen to the other doctors. <br\/>Do you know the <a href=\"https:\/\/www.youtube.com\/watch?v=Trkxjp0qERg&amp;pp=0gcJCfwAo7VqN5tD\" data-type=\"link\" data-id=\"https:\/\/www.youtube.com\/watch?v=Trkxjp0qERg&amp;pp=0gcJCfwAo7VqN5tD\">house that drives you crazy<\/a>?<\/p>\n\n<p class=\"wp-block-paragraph\">\n          <strong>3. Speech therapist<\/strong>\n        <\/p>\n\n<p class=\"wp-block-paragraph\">Gabriel will have sessions with the speech therapist, who will help him relearn to swallow and eat on his own.  <br\/>That&#8217;s great news!<\/p>\n\n<p class=\"wp-block-paragraph\">\n          <strong>4. Irritations and secretions<\/strong>\n        <\/p>\n\n<p class=\"wp-block-paragraph\">His nose and throat are irritated and full of secretions, sometimes with blood.<br\/>At first they thought it was an allergy, but according to the doctor of the day, it could be the oxygen that&#8217;s drying out his nostrils.<br\/>They&#8217;re going to moisten him, maybe add some corticoids to the nose if necessary.<br\/>I think it&#8217;s a good idea.<\/p>\n\n<p class=\"wp-block-paragraph\">\n          <strong>5. Sedatives<\/strong>\n        <\/p>\n\n<p class=\"wp-block-paragraph\">This seems to be the last week with strong sedatives like metadone. That&#8217;s a good thing.<br\/>Then maybe we&#8217;ll be able to do the tests to find out if our son&#8217;s brain is 100% ok after all the stages he&#8217;s been through. <\/p>\n\n<p class=\"wp-block-paragraph\">\n          <strong>6. Hospital discharge<\/strong>\n        <\/p>\n\n<p class=\"wp-block-paragraph\">One day we&#8217;re told it&#8217;ll be out in 3 days, then finally in 1 month, and today it was 5 days.  <br\/>Tomorrow in 1 month?<br\/>Their forecasts don&#8217;t make sense and we don&#8217;t believe them anymore. We don&#8217;t want any more emotional yo-yoing. <\/p>\n\n<p class=\"wp-block-paragraph\">\n          <strong>They drive us crazy<\/strong>\n        <\/p>\n\n<p class=\"wp-block-paragraph\">Generally speaking, accepting this diagnosis is almost impossible for us.<br\/>And accepting that it&#8217;s classified as &#8220;serious&#8221; when, just a few weeks ago, some people had a mild case&#8230; it&#8217;s horrible.<\/p>\n\n<p class=\"wp-block-paragraph\">It&#8217;s as if you&#8217;d entrusted your life&#8217;s most precious possession to a repairman you trusted.<br\/>You saw him make strange gestures, but you thought: &#8220;That&#8217;s his job.&#8221;<br\/>Then, little by little, you began to doubt.<br\/>And one day, he gives you your possession back. Damaged. Damaged. And he tells you that it&#8217;s &#8220;normal&#8221;, that it will be fine&#8230; God willing.   <\/p>\n\n<p class=\"wp-block-paragraph\">But was it God who let the bacteria into the hospital through negligence, or human debility?<br\/>One doctor even told us that when you make complaints, you increase the chances that the patient&#8217;s condition will deteriorate. An equation that would put Einstein on the floor! <\/p>\n\n<p class=\"wp-block-paragraph\">So that&#8217;s the magic recipe for driving people crazy.<\/p>\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n<p class=\"wp-block-paragraph\">\n          <strong>And to return to the positive  <\/strong>\n        <\/p>\n\n<p class=\"wp-block-paragraph\">Because it&#8217;s important to stay the course. We say to ourselves: <\/p>\n\n<ul class=\"wp-block-list\">\n<li>Gabriel has already demonstrated his strength and courage in the past.<\/li>\n\n\n\n<li>I&#8217;ve read in several studies that 80% of children improve as they grow. Unlike adults who have bronchiolitis obliterans (often due to electronic cigarettes). <\/li>\n\n\n\n<li>The pulmonologist who saw him in physics told us that he might one day be able to live a &#8220;normal&#8221; life.<\/li>\n\n\n\n<li>He interacts well and smiles regularly. Looking at him when he&#8217;s calm, you&#8217;d sometimes think there was nothing wrong with him. <\/li>\n<\/ul>\n\n<p class=\"wp-block-paragraph\">So we try to hold on to that as best we can.<\/p>\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n<p class=\"wp-block-paragraph\">\n          <strong>In parallel :<\/strong>\n        <\/p>\n\n<p class=\"wp-block-paragraph\">We&#8217;re looking into the possibility of repatriation to France. If this could be done without any risk, we might consider starting a fund to finance the trip (nothing certain for the moment&#8230; but since we can&#8217;t stand them here anymore&#8230;). <br\/><br\/>We are still actively looking for someone to adopt our cat Pompom. If you are interested, please <a href=\"https:\/\/hopeforgabriel.com\/en\/contact\/\" data-type=\"page\" data-id=\"46\">contact me<\/a>. <\/p>\n\n<p class=\"wp-block-paragraph\">We&#8217;re due to sign the lease for the apartment shortly.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Last night, Gabriel was weak. His temperature was low (34.8), as was his pulse ox. We were scared (post-traumatic hypervigilance) because the last time it happened it wasn&#8217;t a good sign (temp 32 at the worst time). This time, an X-ray, blood tests&#8230; and in the end: nothing. So much the better! This morning, a [&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":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_analysis_target_kw":"","iawp_total_views":0,"footnotes":""},"categories":[17],"tags":[],"class_list":["post-2474","post","type-post","status-publish","format-standard","hentry","category-non-categorise"],"_links":{"self":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/2474","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=2474"}],"version-history":[{"count":0,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/2474\/revisions"}],"wp:attachment":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/media?parent=2474"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/categories?post=2474"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/tags?post=2474"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}