Hospital diary

April to October 2025. Daily news about Gabriel written for family and friends, from his hospital stay to his first weeks at home.

6 October 2025

Six months old, the first month celebrated outside hospital

2 October 2025

Daily life with home care and a confirmed motor delay

27 September 2025

Three days at home, parents again amid tube feeds

24 September 2025

Gabriel leaves hospital and comes home on oxygen

23 September 2025

Hospital discharge postponed at the last minute

21 September 2025

Peaceful nights with his godfather

20 September 2025

An intestinal infection treated, the oxygen concentrator delivered home

18 September 2025

Home care confirmed, discharge possible next week

16 September 2025

The pulmonologist mentions life without oxygen within a year

15 September 2025

A stable day, the home care file moves along

14 September 2025

One atelectasis worsens, and ventilation sessions are hard to bear

11 September 2025

A calm day of respiratory physiotherapy and non-invasive ventilation

10 September 2025

Home care under discussion, some care still to be defined

7 September 2025

Brain scan normal, an immense relief

5 September 2025

A mask for the ventilator, and discharge being planned

4 September 2025

A sleepless night over a feeding tube, home care prepared

3 September 2025

First night on non-invasive ventilation, then a displaced feeding tube

2 September 2025

Overnight CO2 retention: the pulmonologist advises night-time ventilation

1 September 2025

Heart ultrasound normal, no pulmonary hypertension

31 August 2025

Morning tachycardia during sedative weaning

30 August 2025

Fear of an infection, then reassuring blood tests

29 August 2025

Another bronchospasm, and a scare over a kinked oxygen tube

28 August 2025

Four months in hospital, and his breathing is improving

27 August 2025

Pulse therapy ends, an outside physiotherapist sets up the ventilator

26 August 2025

Three pieces of good news for Gabriel’s care

25 August 2025

Gabriel very tired, and doubts about a night-time medication

24 August 2025

Two non-invasive ventilation sessions before a third steroid pulse

23 August 2025

A bronchospasm, and a return to intensive care avoided

22 August 2025

A difficult first trial of non-invasive ventilation

21 August 2025

The non-invasive ventilation machine has arrived

20 August 2025

Day 115 in hospital, Gabriel now weighs 5.4 kg

19 August 2025

The pulmonologist recommends non-invasive ventilation

16 August 2025

A disappointing apartment, then Gabriel at his very best

15 August 2025

Atelectasis is easing as sedative weaning continues

14 August 2025

A day of waiting, and planning for home care

12 August 2025

A stable day, and heartache over the house we left

11 August 2025

Smiles, and an oxygen cannula that won’t stay in place

10 August 2025

Father’s Day in Brazil, and the feeding tube slips out

9 August 2025

Coughing and sneezing, but every virus test comes back negative

8 August 2025

The feeding tube comes out in the middle of the night

7 August 2025

No more IV line, but the atelectases worsen slightly

5 August 2025

First bottle in more than three months

4 August 2025

Blood sugar stabilised, but the PICC line has come out

3 August 2025

A low blood sugar episode and heavy secretions to watch

2 August 2025

A collection of smiles and some help to keep going

1 August 2025

Our first night in a regular room, as a family

31 July 2025

Gabriel leaves intensive care after 90 days

29 July 2025

The pulmonologist confirms bronchiolitis obliterans

28 July 2025

Oxygen increased overnight, and my anger

27 July 2025

Very low white blood cells, antibiotics are stopped

26 July 2025

Second day of pulse therapy, a little neighbour leaves intensive care

25 July 2025

The second pulse therapy begins, the pulmonologist is expected

24 July 2025

The blood culture is negative, no more infection

23 July 2025

Waiting for the go-ahead for pulse therapy

22 July 2025

Still on high-flow oxygen, patience needed

21 July 2025

Gabriel watches your first videos and smiles

20 July 2025

Antifungal treatment before the second pulse therapy

19 July 2025

Pulse therapy cancelled due to fever, and a call for videos

18 July 2025

Doctors plan a new course of corticosteroid pulse therapy

17 July 2025

A restless night and harder breathing

16 July 2025

A lovely day in our arms

15 July 2025

A stable day, slowly but surely

14 July 2025

A stable 14th of July and our first EMDR session

13 July 2025

Breathing muscles worn out by intubation

12 July 2025

The bronchoscopy shows no major lesions

11 July 2025

A difficult night, back on the high-flow cannula

10 July 2025

Blood in the secretions, but the infection is receding

9 July 2025

Hospital-acquired Klebsiella infection, and first talk of leaving intensive care

8 July 2025

A loss in intensive care, and the infection seems under control

7 July 2025

Off high-flow oxygen, but worrying blood tests

6 July 2025

Three months old today, and back on antibiotics

5 July 2025

A fever spike two days after extubation

4 July 2025

First day without the tube, and a rising inflammation marker

3 July 2025

Gabriel is extubated after two months of intubation

2 July 2025

No bronchoscopy, extubation is planned for tomorrow

1 July 2025

Extubation expected within 72 hours

30 June 2025

A day without seeing Gabriel, intensive care closed

29 June 2025

In his parents’ arms again, at last

28 June 2025

Gabriel gets restless and pulls at his tubes

27 June 2025

Positive CT scan, two atelectases and a possible bronchoscopy

26 June 2025

A new lung CT scan, rather encouraging

25 June 2025

The head doctor speaks of improvement and extubation

25 June 2025

The head doctor speaks of improvement and extubation

24 June 2025

A PICC line replaces the central catheter

23 June 2025

A waiting phase as ventilator settings are adjusted

22 June 2025

Air moves better in his lungs, extubation is the goal

21 June 2025

Third and final dose of corticosteroids

20 June 2025

First day of pulse therapy well tolerated

19 June 2025

Oxygen down to 28%, steroid pulse therapy finally begins

18 June 2025

Necker hospital in Paris confirms the diagnosis

17 June 2025

Hospital hygiene, our open letter is heard

15 June 2025

Another week of antibiotics, pulse therapy postponed

12 June 2025

Steroid pulse therapy is announced, then cancelled

11 June 2025

Episodes of tachycardia linked to sedative withdrawal

9 June 2025

Seventh week, a pneumatocele rather than a pneumothorax

8 June 2025

The pneumothorax resolves and oxygen is lowered again

7 June 2025

A pneumothorax, then improvement later in the day

6 June 2025

Two months old, and two pieces of good news

5 June 2025

Doctors fear a progression toward bronchiolitis obliterans

4 June 2025

A stable day, 4.333 kg and some music