Leo comes back home after 11 days spent in the hospital.
Along with a new gadget: concentrator.
Leoparents knew it wouldn’t be the most convenient device,
but they weren’t’ expecting this. :-/

And the most important news:
the Holter test results are good – no cardiac arrest was noted.
The next test in six months.

The days at the Children’s Memorial Health Institute go by so very slowly.
The gloomy building has become so familiar.
It inevitably brings back the last year’s nightmare,
when Leo went there for the first time.

Wednesday
Turns out, Leo has staphylococcus.
The doctors put him on intravenous antibiotics therapy.
It takes seven days and has to be done in hospital conditions,
so Leo surely won’t be going anywhere before the weekend
Non-stop ventilation is not possible.
Leo is angry and keeps disconnecting himself all the time.
And so, unfortunately, what’s left is to connect him directly to oxygen,
which is not recommended for CCHS patients.

Thursday
Leo constantly requires oxygen support.
Leoparents manage to persuade the doctors to actually take advantage of this stay
and put on a Holter monitor for Leo.
(This is actually a pleasant surprise, as during the last hospitalisation it was impossible
for reasons Leoparents couldn’t understand).
It spared Leoparents a visit to Leo’s family doctor (to get a referral to a cardiologist),
then going to the cardiologist (to get scheduled for a Holter monitor),
then to the Children’s Memorial to have the Holter monitor put on,
and then back to the cardiologist (to see the results).
And according to world health recommendation,
it is best to do the test every 6 months,
as unfortunately heart is another weakness of CCHS patients.

Friday
The fourteen-month-old girl from the bed next to Leo disappears.
Is it possible she has just been transferred to a different ward?
Has the sepsis won?
Leo’s on oxygen all the time.

Saturday
Nothing is going on.
All the toys got boring.
Luckily, the sensor plasters came to rescue Leo from boredom :-)
Breathing-wise: no improvement.

Sunday
Another person at the ICU is not managing.
The atmosphere is dark…

Leo doesn’t belong to this place at all; he doesn’t look sick.
It’s only the breathing.
He requires oxygen support all the time.


Monday
The infection recedes, all parameters are fine, but Leo still needs oxygen support.
Even when he is not asleep.
The doctors have run out of ideas what to do next.
We can only hope that the crisis is temporary.

There will be a new piece of junk in Leofamily’s home: an oxygen concentrator.
And along with it, comes a new way of life.
There will be no more walks, or any kind of mobility for that matter.

“Leo…
Far, far away, over the mountains and the sea, and the sand…
There is a beautiful land.
The sun is shining, and the air smells of smoke,
women wear colourful patterned dresses, and the soil is red…

We will go there some day. Together….”


Magda Hueckel and Tomasz Śliwiński (Muzungu-art), a photo from a series “Lights and shade. Africa”

Leo’s saturation is getting worse.

The doctors finally manage to measure the levels of dioxides during oxygen therapy
– the results are bad, there is an accumulation of carbon dioxides.

Leo is switched to a 24/7 ventilator mode.

He is resigned and listless.


Leo’s condition is getting worse and worse.

His home ventilator is not enough,
during his sleep Leo has to be connected to hospital equipment.

During watch he undergoes passive oxygen therapy.

It is a big worry for Leoparents, as according to world standards,
this kind of therapy should not be given to CCHS children.

The ward is depressing.

Anywhere you look: bad prognosis,
hopeless cases,
desperate parents.
In the nearby room two girls, fifteen and ten years old
– both after accidents, both in a coma.

In the bed across Leo’s, a fourteen-month-old girl who came to the hospital
for a laryngological surgery…
and now she’s dying of sepsis…


Leo’s state is getting worse unexpectedly.

Leo is not oxygen efficient at daytime any longer, he requires oxygen support.

Plus he is in a really bad condition psychologically.

He’s banging his head on metal barriers, hitting Leoparents,
throwing things around, and he’s wallowing around his bed in complete despair…


It is pretty unclear what exactly is wrong with Leo.

He has slight traces of infection.

He breathes quite well during the day.

The doctor says he can leave the hospital on Saturday.
Leofamily decided they would go for a walk then,
the weather is supposed to be really nice…


Unfortunately, after not even a week after Leo’s returning home,
jealous of his carefree holiday Ondine reminded about herself.

Leo fell asleep soundly in the evening,
but only after two hours his saturation started to drop.
Even though the ventilator worked on full power, Leo was hypoxic.

Leoparents struggled with the equipment until 2 in the morning,
and yet they didn’t manage to set the right parameters.

They called an ambulance.
A team of three nice and really scared men arrived.

After a five minute conversation, they asked:
– Are you two doctors?

– Yes, for a year and a half now. – answered Leoparents ;-))
On his way to the Children’s Memorial Leo
was ventilated manually with AMBU bag by Leomom.


He was placed straight back to his bed from year before.

Our stay in Kashubia was as always:
great, rainy and socially active.

Mr Leo:

- spent his time outside,


– lived in a commune,



– threw cones into the fireplace,


– walked in the woods,


– bathed in a lake (!!),


– was carried around by Leodad,


– was carried around by Leomom,



– splashed water relentlessly,


– rode a bicycle,


- ate,

– read,


– built,


– made friends,


– flew,


– observed animals,


and generally had a wonderful time :-)


Leo hates younger women.

All girls born after 16th December 2010 cause him severe anger and panic attacks. 

He proved immune to the charm of delicate Zosia, slant-eyed Bogna, energetic Nina…
The first meeting with Emilka, also older than Leo, had a pretty nasty start, too.
When Leo saw her, he emptied the toy basket and hid inside.
Luckily, resourceful and experienced Emilka handled the situation
and won Leo favours in an instant after all.

She found the way to his heart right on – through his stomach, of course…

First, she fed him with blueberries, then peaches,
and then she came up with cheesecake for dessert.
This way, she made Leo’s belly look like many men’s bellies
sculpted by hectolitres of beer drunk in front of the TV ;-)

photo by Ania Palusińska

PS. But to be frank, Leoparents were actually
worried about Leo’s strange reactions to other children around.
Leo would hide, cry, run away, he was scared.
Luckily, the crisis has been averted – after two weeks of frequent confrontations with his peers,
Leo’s fear attacks changed into acts of slight cheekiness.
(taking away other children’ food, drinks, toys, etc. :-))

Leo’s great grandmother can make really good Russian pierogi.

Leo’s great grandmother’s grandson eats 11 for lunch
and her great grandson not much less: 9.