Training in independent breathing
- Stefan
- 13 hours ago
- 6 min read
Today I want to write about a topic that is currently occupying us a great deal: Oliver's breathing.
Oliver is currently being ventilated with an Astral 150 ventilator.
This device is running in what is called spontaneous/time mode (S/T), a mode that already helps him to breathe on his own again.
The device has been set to 26 breaths per minute for months. It's important for us to explain what that actually means.
This number does not mean that Oliver is only allowed to take exactly these 26 breaths.
If his body needs more breaths, he can initiate them himself at any time. The ventilator recognizes this impulse and then assists Oliver in completing the inhalation and exhalation. The little yellow figures in the picture represent breaths initiated by Oliver himself.
Oliver initiates the breath himself – the device helps him to complete it.
He is not passive, but actively involved.
This is called assisted ventilation.
Oliver initiates his breath – and the device helps him complete it. He is therefore not passive. His body is actively participating.
And that is a very important point.
What happens when Oliver initiates a breath?
When Oliver initiates a breathing impulse himself, the ventilator recognizes this impulse. It doesn't simply switch on blindly, but reacts to his body.
The device then supports:
inhalation , by supplying air
and exhalation , by controlling the breathing process
You can imagine it a bit like someone offering you a hand while you climb stairs. You walk yourself – but you are supported.
Visit from the lung specialists
On January 27, 2026, we had a visit from two lung specialists , both specializing in tracheostomies .
Both of them told us independently that they wanted to support us in developing a long-term plan for how Oliver can one day be weaned off the ventilator.
This is not a quick process.
But it's a realistic one.
An injury at the C2/C3 level is located very high in the neck. Nerves that control breathing, among other things, run through this area. With a complete spinal cord injury at this level, independent breathing is usually impossible.
The medical situation – C2/C3
Oliver's spinal cord injury is located between C2 and C3 , so very high up in the neck area of the spine.
The "C" stands for cervical and refers to the cervical spine . In total, there are
Seven cervical vertebrae, numbered from C1 to C7 . The smaller the number, the closer the vertebra is to the head and brain.
Medically speaking, an injury at the C2/C3 level means that nerve pathways controlling very basic bodily functions are affected. Among other things, the nerves that influence the diaphragm —the most important respiratory muscle—run through this area. The diaphragm ensures that the lungs can expand and contract with each breath.
In cases of complete spinal cord injury at this level, these signals typically no longer reach the diaphragm. In such cases, independent breathing is usually impossible , and those affected are permanently dependent on mechanical ventilation. Therefore, injuries in the C2/C3 region are considered medically particularly severe.
For precisely this reason, it has been repeatedly and very carefully checked over the past few months whether Oliver is even capable of controlling his own breathing. This did not involve exertion, but rather short, controlled situations in which it was observed whether his body could independently initiate breathing impulses.
And yes: He can.
This ability is the basis for us to now actively address the issue of breathing – step by step, carefully and with close medical supervision.
The tests – and very importantly: without suffering
During these tests, Oliver was disconnected from the ventilator for a few seconds .
No longer.
Not uncontrolled.
And certainly not to make him suffer.
We have all the necessary equipment here at home : oximeters, alarms, extraction systems – everything.
The doctors explicitly confirmed this to us. They said they had rarely seen a child in home care who was so professionally equipped .
And we owe that not to ourselves, but to the people out there who support us.
These brief moments revealed:
Oliver's body initiates breaths .
This is crucial.
Ventilation does not mean that machines replace life.
Oliver's life currently depends on a ventilator.
But that doesn't mean a machine will take over or replace his life.
A ventilator supports breathing – it does not replace consciousness, perception, or the body's own functions . Oliver is awake. He reacts, feels, plays, laughs. His body works – only a part of it needs support.
In people whose bodies can no longer initiate breathing on their own, a machine takes over this task completely. In such situations, the machine is the only way to maintain gas exchange.
It's different with Oliver.
His body can initiate breathing impulses. The ventilator recognizes these impulses and assists him in completing inhalation and exhalation. It works with his body , not in his place.
Oliver is in very good physical condition overall. That's precisely why the doctors say that now is the right time to actively address the issue of his breathing and gradually involve his body more again.
Habituation – the body learns what it no longer needs.
The body is a creature of habit.
If you don't do any sport, you lose stamina.
Lying in bed for a long time makes you lose strength.
And it's the same here.
Oliver has been on a ventilator for almost 9 months .
The tracheostomy surgery was performed on May 2nd , meaning that ventilation is provided directly via the trachea, not via the mouth or nose.
His body is now familiar with this condition.
He spends about 30% of his life doing this.
That doesn't make it impossible – but it does make it difficult.
Age – both a curse and a blessing
Oliver is 2½ years old .
You can communicate with him, just as you can with a child of his age. Because of his age and his understanding, he has an incredibly positive outlook on life. But you can't explain to him:
"Now please take a deep breath, it's important."
He only knows:
It's unpleasant.
Children remember what feels bad.
Then they tense up.
Instead of calm, deep breaths, there are quick, short ones.
But:
He makes them.
And that's the difference.
Things were different before the surgery in Chicago.
Back then, when he was briefly restrained – for example, when his neck brace was changed – his body did n't react at all .
Things are different today.
Often he doesn't even notice it anymore.
We just need to remember to turn off the alarm beforehand.
The training – slow, quiet, without pressure
The goal is not simply to disconnect Oliver from the device.
The goal is to challenge the body in a new way without it perceiving it as stress or punishment.
The device had been set to 26 breaths for months.
If he needed more, he made more.
Even if he needed less, he still got 26.
Now we will slowly change this number.
Yesterday: 25 breaths
Today: 24 breaths
If he needs more, he can trigger them himself at any time.
He is constantly monitored with an oximeter . Should his oxygen level deteriorate, an alarm sounds immediately.
This is training.
No suffering.
Nobody runs a marathon from a standstill.
You don't just walk again immediately after breaking your leg.
They train.
And that's exactly what we're doing here.
What is realistic?
And now the most important thing.
Yes – it is realistic that Oliver will one day breathe on his own again.
This has been confirmed to us.
And that's also shown in today's video.
But:
This is not a matter of months.
More like years .
We're talking about 1 to 3 years .
Oliver first needs to reach an age where he understands what breathing means. Where he can tell us how it feels. Whether he can consciously control his breathing.
His young age was a gift in many ways.
This presents an additional challenge.
Our feelings about it
Laura and I were devastated on Tuesday evening.
After such a positive visit from Dr. Marco on Saturday, it initially brought us down.
But when we look back two days later and see where we came from, the prospect that Oliver might be breathing on his own in a few years is something very big.
So let's get started.
You will continue to see Oliver using a ventilator.
But perhaps now with a different perspective.
Because even with a ventilator, you can learn to breathe again .
And that's exactly what we're working on.
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