We’ve been out of the hospital for three days now.
Gabriel is stable.
Nothing new compared to the last few weeks of hospitalization.
He continues to radiate his smiles.
Its breathing remains unpredictable: sometimes good, sometimes more difficult. We now know that this will be our daily routine.
I didn’t write during those three days because it was as if we’d entered a space-time rift.
Rediscovering our role as parents
We resumed our role as baby’s parents.
We only lived a “normal” life for two weeks after his birth. After that, we weren’t really parents, we were warlords.
Today, we’re plunged back into this role, without really having had time to acquire all the skills.
Everyday illness
Masks, gowns, syringes, catheters… illness is also the rhythm of our days.
In reality, we don’t have much time to think about it in the abstract, because it’s always there. It comes back to bite us in the ass when we have 5 minutes to breathe.
Every three hours, we have to prepare the milk, hang it on the tripod, and adjust the flowmeter so that it passes through the probe. Sometimes it gets blocked, and you have to check everything.
The same goes for medication injected into the catheter with a syringe: sometimes it overflows, sometimes it explodes.
Then there are the aerosols, several times a day. In short, there’s something to do almost every hour of the day.
Health professionals are also involved: two physiotherapy sessions every day, a speech therapy session, not to mention home care visits. The problem is that not everyone is familiar with bronchiolitis obliterans, which adds to the stress. We therefore call in private specialists, but this costs a small fortune.
Today, we had yet another problem with oxygen deliveries, as well as a few more snags that generate even more tension. And after 5 months in hospital, tension easily explodes.
The financial challenge
All this brings us to the subject of finances.
We spend like crazy: private doctors, drugs, equipment. I haven’t done the exact math, but it’s happening very fast. At the same time, we have less and less time and energy to work. This creates tension as we spend more than we earn.
We thought of going to France. We asked around, but they don’t fully cover it either. And there are several obstacles: It’s hard to find physiotherapists who don’t move around at home. NIV is not covered by Gabriel’s homecare contracts, so you’d have to rent the machine on the side. In short, it would certainly be more expensive, especially with the cost of living there. Not to mention the added risk of winter viruses.
From a medical point of view, we know that monitoring the first 2 years is essential to give Gabriel a chance of recovery and ensure a “normal” life.
A fragile organization
During the day, Manuela is on call. At night, it’s me. For the last 3 days, I’ve been setting my alarm clock every 30 minutes to wake up in case I’m asleep, check that everything’s okay and prepare the medication or milk. Then I try to get a few hours’ rest during the day.
Fortunately, we were able to count on the help of people we contracted 24 hours a day.
Geraldine, in particular, is a trustworthy person who gives us a break when she’s around.
Bastien left again last night. His presence did us a lot of good. A golden godfather. An exceptional brother at heart.
In the apartment, we push furniture around to make room for all Gabriel’s equipment. His room is already quite full with all the equipment. We’d have liked to rent something bigger out of town, but the doctors advised against it at first, for fear of the distance from the care. It would be so much easier if we could go home…
Staying on course
As you can see, there’s a lot to deal with. Stress, financial and medical challenges, an organization that will improve over time, but remains fragile.
Our only source of joy: Gabriel’s smiles.
We don’t know what the future will bring.
But one thing is certain: we’re doing everything we can to give her the best possible chance.
