There were thousands of thoughts spinning round Leomum's head,
when, together with her son, she was going under the deck of a submarine.
"What is the saturation of CCHS kids under the water?
If they don't breathe well high in the mountains, maybe under the water they don't breathe at all?
Has someone ever checked that?
Has someone with CCHS travelled on a submarine before?"

Now Leomum knowns.
If something was a to happen to Leo at 30 meters below sea level, it was rather hyperventilation ;-)
For the whole 40 minutes of the trip, Leo's saturation was 100.
He was so excited, that he breathed even better than usual.

Additionally, it appeared that Locomotive (Leodog) can speak english.

And these are the views that the Leodog observed:




There are two systems implanted inside Leo.
The right system and the left system.
Each of them consists of receiver, cable and a nerve contact.
Both systems are operated by the external transmitter.
Both systems stimulate the movement of the diaphragm.
One stimulates the movement on the right side, the other on the left side.
The movement of the diaphragm cause breathing.
In case of failure of the left system, the breathing is preserved by the right system.
And the other way round: if the right system fails, the left one is safeguarding.

In case of Leo, the left system broke.
There is a kind of error. Since the beginning.
Something is not working properly inside.
However, periodically Leo can sleep supplied only by the right system,
and safeguarded by the parents and pulseoximeter.


It was evening time.
Leoparents were translocating in the direction of the airport, where on the next day in the early morning they had a plane to the Canary Islands.
They were translocating with all their abundant luggage.
Unfortunately, London got stuck, underground trains were late, the bus hadn't come
and the whole trip lasted two hours longer than expected.
Leo was exhausted after sightseeing the whole day.
His eyes were closing.
And Leoparents had still 4 train transfers to make.
Connecting Leo to the ventilator was out of the question, it would make the whole travel impossible.
Pinching Leo and telling him not to sleep did not work either...

The situation was saved by the pacers.
Leoparents connected Leo.
They put a little pulseoximeter onto his finger.

And Leo fell asleep on the underground.
And he woke up on the next day, at the hotel!


The train transfers were terrible, but they managed.
Leomum carried sleeping Leo from one train to another,
and Leodad - three suitcases and two bags ;-))
Leoparents were exhausted.
It was a nightmare.
A nightmare, which Leo didn't notice at all, peacefully sleeping,
affecting fellow travellers.
- He is sleeping so sweetly! - they were commenting, 
totally unaware that this sweet sleep is so complicated and so risky...

Pacers are fantastic! We have to fix the left side.



As soon as Leofamily got to the destination place,
they left most of the luggage
and equipped only with the hand luggage, started exploring the surrounding areas.
(the hand luggage is a backpack filled with:
suction machine, disposable suction tubes, ambu bag, little saline bottles,
tracheostomy tube, pulseoximeter, sterile gauze pads, adhesive tape,
pacers, food, water and before-mentioned notebook and a pencil,
which recently became inseparable part of Leo hand luggage).

Because Leo became obsessed with drawing!
All the time he spent with his notebook - diary book,
he was drawing everywhere, everything and it all possible circumstances.
In bed, in a car, at a restaurant, on a beach, on a ferry, at the airport...
Basically, he was drawing all the time, throughout the whole trip, with little breaks for other actions.


All he had seen or experienced,
he immediately had to process onto the paper.
So thanks to that Leofamily came back with double records of the trip.
Photographic and in drawings.
Here is just a little fragment of it:

Leoart, London (St. Paul's Cathedral, Double-decker, Tower Bridge, Big Ben, London Eye, Leo)

Leoart, "Plane" (Pilot, Passengers looking through the windows and seeing different things, above there are luggage compartments, no smoking sign and seatbelts-on sign)

Leoart "Canadian Flora" (different types of cactuses and agave)

Leoart "Feeding of penguins with fish"

Leoart "Leomum is feeding a parrot" (Leomum, on the right (!!!) has a sunflower seed in her mouth, which she gives to a parrot straight in her beak. Yes, it really happened!!! It was a nightmare!!!) 

Leoart "Travel with the ferry" (Leofamily onboard, a car under the deck) 

Leoart "Underwater" (Leotravel by submarine, you can see a fish and a seahorse through a window)
The answer is:
Leo was in Africa !!!! (in a geographic way, because for sure it wasn't Africa in administrative or cultural manner ;-))
Leo was on Furteventura island.
Leo was on Lanzerote island.
Leo was on Graciosa island!!!!
And on the way he also managed to visit London!!!

And it all was a result of atonement of some airlines,
which decided to compensate in such a way a bit unpleasent incident...

So, Leofalmily decided to go on a vacation
and charge its sun batteries before the next encounter with a pacer*.
To spend ten days on Canary Islands with a CCHS child,
you have take:
- suitcase XXL (medica devices and materials)
- suitcase XL
- suitcase S (medical devices, hand luggage)
- backpack (medical devices, hand luggage)
- bag 1 (portable oxygen concentrator, hand luggage)
- bag 2 (ventilator, hand luggage)
- additional hand luggage (passports, phones, notebook and pencil**, etc.)

You cannot forget anything, because the consequences could be fatal.
You also cannot lose anything, for example when running in hurry through the airport.
And keeping an eye on all those luggage pieces,
you cannot also forget about keeping an eye on the child.

It was hard.
But it was worth it.
Defintely !!!!!

Leofamily spent together a wonderful time.
Leo was walking on the rocks, climbing volcanos, cruising a ship.
He was observing waves, swimming in the sea, collecting stones.
He saw a desert, travelled on a camel, he was even 30 meters under the water.
Now words can express our delight!!!!

*&** - concerning the pacer and pencil, we will reveal everything in the next posts.
















"With this child the furthest you go will be the balcony."

From a very remote and beautiful balcony,
Leofamily sends you all the best New-Year-wishes:
broad horizons, wonderful perspectives
and fulfilling your dreams !!!

And soon there will be a story
about travelling with a ventilator and tracheostomy.
Who will guess, where Leo just has been? :-)


The left receiver of the pacer does not work.
The left side of the diaphragm 
The left lung does not breathe.

Leoparents write an email to the producer.*
They get an answer in half an hour.
They arrange a phone conversation with the Representative of the company.

- It's about Leo, right? Yes, I have been present at his operation! Of course I remember him. Everything worked fine.
And I know Leo from the film...- said the Representative.

Leodad talks with the Representative for more than an hour.
Representative first asks many detailed questions and then, she gives an instruction, how to perform the tests.
It's impossible, that the mechanism inside Leo broke.

In the evening Leoparents act as instructed. They test the device.

The result is unequivocal.
The right side of the pacer works fine.
The left side is dead.
The impossible becomes possible.

JAVIER PÉREZ Metamorfosis

* It's still a mystery, how is it possible that no one from the Home Ventilation at Children’s Memorial Health Institute managed to get in touch with the producer of the pacer during the last 2 months, despite of initial agreement to take care of Leo pacer after its implementation ;-/
It became gloomy.
The pacer stopped working.
One week ago.
And to be more precise, its left half stopped working.
No reaction for the impulse, no chest movement.
Leoparents did all possible tests.
And it all lead to one conclusion.
It was the thing that what was put inside Leo that broke.
The receiver.

The consequences of such damage are severe.
It means reoperation.
The hospital, Sweden, nerves, ICU, narcosis, needles,
cut, wounds, pain, stitches, scars, convalescence.

But it could have been worse.
It could be the nerve that got damaged.

Leoparents stayed in the gloom for a week.
Afraid of facing the facts
or confronting them by quick email consultations.
Because the ones who have the knowledge are far away...

And finally Leoparents received an email from Leodoctor Anders.
With new guidelines.
Yesterday they did a test.

The receiver responded.
The gloom lightens up.
Maybe it will be alright...


Some time ago Leoparents went away, overseas,
from where each day they called Leo via Skype,
which led him into total confusion.
Something was wrong.
Beacuse when there was early morning at Leoparents' place,
there was later afternoon at his,
when there was light at theirs, it was dark at his.

After the return Leoparents owed him an explanation.
So they made him a proper presentation using a globe and a torch.

Leo went mad with joy!!!!
He understood day and night, light and dark
and the movement of the Earth around its axis. And a polar night!!!
He understood that, when there is a night in Mongolia, there is a day in Canada,
and an evening in Japan, and a dawn in Africa
And he learnt quickly to assess that,
and the theme of time zones not only became part of daily routine conversations,
but also it was used as a strategy of resistance.


Leo is sitting at the table, eating supper.
At one point his gaze falls on the darkness outside the window.
He suddenly bursts into tears.
- What has happened Leo? - Leomum asks.
- I want that the night is now in New York!!! - Leo responds, crying.

It is example of how you can use the newly required knowledge,
to communicate to parents, in a camouflaged way,
that you do not want to go to sleep.


Zachęta, National Gallery of Contemporary Art.
- Leo, what did you like the most at the exhibition?
- Mirrors.

The struggle with the pacers continue.
Leoparents knew, that it would take a while,
but they didn't knew, that this while will be so hard.
Emotionally and physically.

Until 2 am Leo sleeps like a log.
Nothing disturbs the silence, saturation and CO2 are ideal.
And after 2 am the real ride starts.
Saturation goes crazy, alarm is beeping all the time.
Leoparents change shifts, looking for ideal parameters of the pacers,
changing Leo's position, putting pillows under his head,
cloging his nose (!), sucking out saliva from his tracheo and others.

One morning Leomum, after Leodad's night shift,
came to Leoroom and saw Leo connected to the ventilator.
The pacer didn't manage. Leo didn't manage.
Leomum felt exactly like THAT TIME.
As if she had stomach full of icy liquid tar, that she cannot vomit.

And to add things worse, there is a huge disappointment
by the home ventilation programme at Children's Memorial Health Institute*.
There is lack of words to express this pique...

Fortunately, there is hope in dr Anders, who expressed his willingness to come from Uppsala to help us.

Shin'ya Tsukamoto, Man of iron

* This concerns the Head and procedures, not the regular workers.