{"id":2603,"date":"2025-08-20T21:21:19","date_gmt":"2025-08-21T00:21:19","guid":{"rendered":"https:\/\/hopeforgabriel.com\/20-08\/"},"modified":"2025-08-20T21:24:59","modified_gmt":"2025-08-21T00:24:59","slug":"20-08","status":"publish","type":"post","link":"https:\/\/hopeforgabriel.com\/en\/20-08\/","title":{"rendered":"20\/08"},"content":{"rendered":"\n<h3 class=\"wp-block-heading\">\n          <strong>Day 115 at the hospital<\/strong>\n        <\/h3>\n\n<p class=\"wp-block-paragraph\">\n          <strong>21h11<\/strong>\n        <\/p>\n\n<p class=\"wp-block-paragraph\">Gabriel spent the night with Amelia and his mom.<\/p>\n\n<p class=\"wp-block-paragraph\">The night was a bit restless: Gabriel was tired and had a pronounced diaphragmatic draught. This morning and until midday, this was still the case. <\/p>\n\n<p class=\"wp-block-paragraph\">Last Saturday, a physiotherapist asked me about the pressure on Gabriel&#8217;s respirator.  <br\/>At the time, I replied that I didn&#8217;t know, that it wasn&#8217;t my role and that it must be marked in their records! She told me no, and I immediately contacted the head physiotherapist to inform her of the situation.   <br\/>This morning, the boss told me that she hadn&#8217;t seen my message until this morning (Saturday, Sunday, Monday, Tuesday, Wednesday&#8230;), which frankly annoyed me.  <br\/>I told him I never wanted to hear another &#8220;I don&#8217;t know&#8221; in this hospital&#8230;<\/p>\n\n<p class=\"wp-block-paragraph\">Earlier, we asked Gabriel&#8217;s weight.  <br\/>It had been two months since any weighing had been done in front of us, even though medicines are sometimes dosed according to weight.  <br\/>When I asked the last time it had been weighed, the answer was the same: &#8220;I don&#8217;t know&#8221;.  <\/p>\n\n<p class=\"wp-block-paragraph\">Finally a scale was found, and the result: Gabriel had gained 20% in weight since the last measurement. He now weighs 5.4 kg. Great news!  <\/p>\n\n<p class=\"wp-block-paragraph\">The doctor then came by. Concerning the weight, he told me that he already knew it for the medication.<br\/>I have the distinct impression that they estimate an average weight without actually weighing the children (pure assumption on my part, as I&#8217;m certain that he hasn&#8217;t been weighed since leaving the ITU). <\/p>\n\n<p class=\"wp-block-paragraph\">We were also able to discuss the comments made by the various pneumologists and physiotherapists we had met the day before. <br\/>We explained that our aim was not to confront them, but to create together a real team of excellence to accompany Gabriel. <br\/>We also reminded him that for something as basic as bronchiolitis, they haven&#8217;t really succeeded, given his pathology today&#8230;<br\/>So, obviously, for something as rare and complex as bronchiolitis obliterans, we had some fears&#8230;.<\/p>\n\n<p class=\"wp-block-paragraph\">Several changes have already been implemented:<\/p>\n\n<ul class=\"wp-block-list\">\n<li>Less aerosols and Pulmicort<\/li>\n\n\n\n<li>Less Aerolin<\/li>\n\n\n\n<li>Aspiration only if necessary (he had it up to three times a day from the start, and it&#8217;s a very aggressive procedure)<\/li>\n\n\n\n<li>A Philips Trilogy Evo machine should be arriving soon to help with his breathing.<\/li>\n<\/ul>\n\n<p class=\"wp-block-paragraph\">Regarding this machine, we were told that it would take time, without giving a precise deadline.  <br\/>The famous &#8220;we don&#8217;t know when&#8221; that makes your ears bleed.  <br\/>So I spent two hours of my afternoon looking for this machine all over Brazil, getting quotes (even with a plane ticket to pick it up) and then I sent the whole thing to the hospital.  <br\/>No answer yet&#8230;<\/p>\n\n<p class=\"wp-block-paragraph\">This machine represents a small step backwards in Gabriel&#8217;s respiratory support. But from what we understand, it&#8217;s actually an excellent way of encouraging his development and the expansion of his lungs.   <br\/>It&#8217;s better to use it now rather than later, to help him avoid overexertion.<\/p>\n\n<p class=\"wp-block-paragraph\">At the same time, the agency managing the apartment continues to prepare the property. We&#8217;ve explained our situation to them, and they&#8217;re coordinating all the tradesmen to repair the things broken by the previous landlord.   <br\/>Perhaps we&#8217;ll be able to settle in by the end of the week?<\/p>\n\n<p class=\"wp-block-paragraph\">Finally, we&#8217;re still looking for a foster home for our cat Pompom.  <br\/>We hope to get him back one day, but at the moment, with Gabriel&#8217;s situation, that&#8217;s not possible.<\/p>\n\n<p class=\"wp-block-paragraph\">On that note, I&#8217;m going to start my working day with a cup of coffee and a 90&#8217;s house playlist to relax me.<\/p>\n\n<p class=\"wp-block-paragraph\">Good night, world. Tomorrow is another day. <\/p>\n\n<p class=\"wp-block-paragraph\">PS: <a href=\"https:\/\/hopeforgabriel.com\/en\/send-love\/\" data-type=\"page\" data-id=\"184\">Keep sending love to our son<\/a><\/p>\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Day 115 at the hospital 21h11 Gabriel spent the night with Amelia and his mom. The night was a bit restless: Gabriel was tired and had a pronounced diaphragmatic draught. This morning and until midday, this was still the case. Last Saturday, a physiotherapist asked me about the pressure on Gabriel&#8217;s respirator. At the time, [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"","_seopress_redirections_param":"","_seopress_redirections_type":0,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[],"_seopress_pro_schemas_manual":[],"_seopress_pro_rich_snippets_disable_all":"","_seopress_pro_rich_snippets_disable":[],"_seopress_pro_schemas":[],"iawp_total_views":0,"footnotes":""},"categories":[17],"tags":[],"class_list":["post-2603","post","type-post","status-publish","format-standard","hentry","category-non-categorise"],"_links":{"self":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/2603","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=2603"}],"version-history":[{"count":0,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/2603\/revisions"}],"wp:attachment":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/media?parent=2603"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/categories?post=2603"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/tags?post=2603"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}