Yesterday, a neurologist came by quickly. She put her handbag among Gabriel’s things…
She mentioned the brain scan. She said that everything seemed normal, but that further tests might be necessary.
The night went well. No particular problems. For the past two or three nights, Gabriel has been sleeping quite well, although he sometimes wakes up restless. He still has chest tightness from his bronchiolitis obliterans.
This morning, a member of the hospital told us that some members of the hospital are pushing for Gabriel to be able to go home with all the necessary care recommended by the doctors.
But the home care service seems to be refusing some of it. This shows the discrepancy between medical prescriptions and administrative decisions. By telling her what we go through every day, and showing her the evidence, this person, moved, confided in us the difficulties and encouraged us to remain strong.
The hospital also offered to move Gabriel’s room because of the air conditioning.
After checking, there was no problem with the air conditioning. Did this raise any questions?
Gabriel stayed with his mom. He did his NIV exercises to support his lungs and relieve his respiratory muscles. He also had a speech therapy session to make progress towards the removal of the feeding tube. For the past four months, he has been fed solely by tube, which remains a potential source of infection.
The laboratory manager and a nurse came to apologize to Manuela. The incident concerned a blood drive where tubes had fallen to the ground, been picked up and used.
Thanks to Manuela, the problem was reported and recognized by management.
The hospital’s application, which is supposed to keep us informed in real time, has shown its limitations.
A vaccine noted as having been administered had not in fact been administered. It’s hard to believe in anything…
For my part, I had a session with a psychologist. It gave me some perspective.
The constant tension we experience at the hospital is heavy.
I’ve come to understand that it’s essential to try, despite everything, to preserve moments of calm.
At the same time, the situation is impacting our businesses. Manuela received the worst rating ever for her Airbnb business. She does everything she can remotely, and her team works well. But the absence of a direct presence is weighing on her business and preventing her from maintaining communication and marketing. As for me, my business is down too. Even if I delegate and organize myself, I don’t have enough time to take care of my marketing too.
Following the psychologist’s advice, I’m going to sleep at home tonight. Manuela stays with Gabriel at the hospital.
I’d like to take this opportunity to say how proud I am of my wife. She fights every day so that Gabriel can have access to the care and rights he deserves. Even though we both go through difficult times, I love her deeply. I’m extremely proud that she’s my wife and the mother of my son.
Today I invite you to send some love to Manuela.
