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 another story.
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.
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.
👉 Moral: be very careful with your children! And don’t hesitate to reread my advice in the dedicated article.
If I can save you any trouble, I’ll be glad to.
Home care: a far from adequate system
Every day, we discover the limits of the home care offered by hospitals.
Clearly, their aim is to spend as little as possible on patients. And Brazilian law doesn’t really encourage them to do any better.
Result:
- Professionals sent to Gabriel’s home, with no knowledge of his rare pathology.
- 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.
- Caregivers chosen primarily for their low cost, not their skills.
Faced with this situation, we had to take matters into our own hands. I’ll be talking about this shortly.
A fearsome reputation
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.
I can’t go into details… but if you knew, you’d be terrified.
It’s clear that we’ll do everything in our power to never return to this establishment.
Gabriel’s developmental delay
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.
We also learned that many children who undergo ECMO are left with significant after-effects, often neurological… or even don’t survive.
For that reason alone, Gabriel is a miracle worker.
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.
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.
He’s also very alert and a quick learner, which is very comforting.
We also hope he won’t have any trouble talking.
We’re keeping our fingers crossed that all this will improve.
Gastric tubes and speech therapists
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.
All equipment is at our expense (the hospital prefers to save money so that the big boss can continue to receive his millions).
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…
In the meantime, he tastes cotton buds flavored with strawberry, melon or orange… and smiles.
More
There’s a lot going on that I can’t talk about yet.
But please know that we are doing absolutely EVERYTHING to ensure that Gabriel has the best possible care and can one day live a normal life.
