{"id":3175,"date":"2025-10-02T21:18:53","date_gmt":"2025-10-03T00:18:53","guid":{"rendered":"https:\/\/hopeforgabriel.com\/02-10\/"},"modified":"2025-10-02T21:19:45","modified_gmt":"2025-10-03T00:19:45","slug":"02-10","status":"publish","type":"post","link":"https:\/\/hopeforgabriel.com\/en\/02-10\/","title":{"rendered":"02\/10"},"content":{"rendered":"\n

For the past few days, we’ve been continuing our journey at home with Gabriel.<\/p>\n\n

Overall, he’s stable, but he’s occasionally given us a good scare: very heavy breathing with wheezing, vomiting in the last two days…<\/p>\n\n

\n How he caught basic bronchiolitis<\/strong>\n <\/h2>\n\n

The initial problem was that Gabriel caught bronchiolitis. Everything that followed in hospital was another story. <\/p>\n\n

I had already written an article with advice on how to avoid exposing your children to this disease. This week, a health professional reminded us that, most of the time, bronchiolitis is transmitted by contact with other children. <\/p>\n\n

And in our case? Gabriel only saw four children, none of them sick. But what we didn’t know was that a child can be a carrier without showing any symptoms, and transmit the virus very easily. <\/p>\n\n

\ud83d\udc49 Moral: be very careful with your children! And don’t hesitate to reread my advice<\/a> in the dedicated article. <\/p>\n\n

If I can save you any trouble, I’ll be glad to.<\/p>\n\n

\n Home care: a far from adequate system<\/strong>\n <\/h2>\n\n

Every day, we discover the limits of the home care offered by hospitals. <\/p>\n\n

Clearly, their aim is to spend as little as possible on patients. And Brazilian law doesn’t really encourage them to do any better. <\/p>\n\n

Result:<\/p>\n\n

    \n
  • Professionals sent to Gabriel’s home, with no knowledge of his rare pathology.<\/li>\n\n\n\n
  • Completely unsuitable approaches: classic techniques are applied to remove secretions… except that Gabriel has almost none, since he suffers from obliterative bronchiolitis and not bronchiolitis.<\/li>\n\n\n\n
  • Caregivers chosen primarily for their low cost, not their skills.<\/li>\n<\/ul>\n\n

    Faced with this situation, we had to take matters into our own hands. I’ll be talking about this shortly. <\/p>\n\n

    \n A fearsome reputation<\/strong>\n <\/h2>\n\n

    Every day, we hear new stories about the hospital. And frankly, it’s not reassuring. The institution’s bad reputation has been known for a long time. <\/p>\n\n

    I can’t go into details… but if you knew, you’d be terrified.<\/p>\n\n

    It’s clear that we’ll do everything in our power to never return to this establishment.<\/p>\n\n

    \n Gabriel’s developmental delay<\/strong>\n <\/h2>\n\n

    Last night, we learned officially what we had suspected: Gabriel has a severe motor delay. Not surprising, after spending three months strapped to a bed in intensive care. <\/p>\n\n

    We also learned that many children who undergo ECMO are left with significant after-effects, often neurological… or even don’t survive.<\/p>\n\n

    For that reason alone, Gabriel is a miracle worker.<\/p>\n\n

    Today, we can’t say with any certainty whether he is cerebrally unharmed. The CT scan we’ve done isn’t enough: we’ll have to wait for a brain MRI in three months’ time to find out more. But we can already see that his motor difficulties are more marked on the side where he had ECMO. <\/p>\n\n

    The good news is that there’s still a three-month window (until he’s nine months old) to catch up on some of his motor delays. We’re going to do everything we can. <\/p>\n\n

    He’s also very alert and a quick learner, which is very comforting.<\/p>\n\n

    We also hope he won’t have any trouble talking.<\/p>\n\n

    We’re keeping our fingers crossed that all this will improve.<\/p>\n\n

    \n Gastric tubes and speech therapists<\/strong>\n <\/h2>\n\n

    The catheter is a real challenge. We’ve become real caregivers: masks, gowns, hydroalcoholic gel in every corner of the house… and every day, we inject medication and milk via the catheter. <\/p>\n\n

    All equipment is at our expense (the hospital prefers to save money so that the big boss can continue to receive his millions).<\/p>\n\n

    The speech therapists are working with Gabriel to teach him to eat again. He seems to be enjoying it, but it’s tiring on his respiratory system. We’re talking about 3 months, maybe more, before we know whether he’ll be able to remove the tube… <\/p>\n\n

    In the meantime, he tastes cotton buds flavored with strawberry, melon or orange… and smiles.<\/p>\n\n

    \n More<\/strong>\n <\/h2>\n\n

    There’s a lot going on that I can’t talk about yet.<\/p>\n\n

    But please know that we are doing absolutely EVERYTHING<\/strong> to ensure that Gabriel has the best possible care and can one day live a normal life.<\/p>\n\n

    <\/p>\n","protected":false},"excerpt":{"rendered":"

    For the past few days, we’ve been continuing our journey at home with Gabriel. Overall, he’s stable, but he’s occasionally given us a good scare: very heavy breathing with wheezing, vomiting in the last two days… How he caught basic bronchiolitis The initial problem was that Gabriel caught bronchiolitis. Everything that followed in hospital was […]<\/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-3175","post","type-post","status-publish","format-standard","hentry","category-non-categorise"],"_links":{"self":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/3175","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=3175"}],"version-history":[{"count":0,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/3175\/revisions"}],"wp:attachment":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/media?parent=3175"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/categories?post=3175"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/tags?post=3175"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}