Phone? Keys? Wallet? Book? Handkerchiefs? Lipstick?
But he carries something completely different.
Leo, in his little black handy bag, carries FREEDOM.
And, since he has this handy bag (and it started working),
he can do things he had not even dreamt about before.
Thanks to this little bag, he can watch a movie in a cinema or a play in a theatre,
and focus only on what is currently on screen or on stage,
and does not have to remember about the breath, does not have to breathe deeper and deeper
looking at the same time at the pulseoximeter to check whether the saturation in right.
He can go out with his parents to an evening party and totally chill out,
because the machine in the bag remembers about his breath, instead of him.
And, above all, he can do something what every child should be able to do:
whenever he feels a need, he can cuddle up to mum or dad and...
just fall asleep!!!
In a restaurant, on a train, in a park, in a forest, in a car.
No one, who has not experienced the horror of CCHS,
can imagine what kind of luxury it is...
that people sleeping with the pacers have much better sleep quality, than those using the ventilator.
Leoparents thought that it was great, but they didn't exactly knew at that time, what does it mean.
What does it mean to have a well-rested child...
And a well-rested child, it's a completely new child.
Eruption of energy, volcano of jokes, geyser of ideas.
It's a child frisky and frolicsome.
It's a child running everywhere, climbing up the tables, which was of no interest for him before.
It's also a child more confident, loquacious and giggling all the time.
It's also a child stubborn and resolute!
A rested child behaves a bit like a cat under the influence of catmint.
All people, who don't like the aforementioned features,
should really rethink changing a ventilator into pacers.
But Leoparents are extremely happy!!!
But they still can't stop wondering how it was possible
in such a short period of time.
It's been just two weeks!!!!
The pacers finally work the way there were supposed to do few moths ago!!!
Leo ventilates in the exemplary way.
Leo does not disconnect from the pacers (like in the case of the ventilator).
Leo does not lie on the pipe and does not cover the valve (like in the case of the ventilator).
During the night you don't have to change any settings (like in the case of the ventilator).
In the morning the secretion in the tracheostomy is not that thick as after the night with the ventilator.
The pacers are much quieter that the ventilator.
98% of the night alarms is due to the error in the reading of the pulseoximeter,
which means that Leoparents now, instead of waking up over a dozen times, have to wake up only a few times during a night.
I guess we might state now, with a bit of shyness,
that the life of Leofamily has a chance to become a bit less difficult!!!!
Now the next step of our dreams - decannulation !!!!
Thank you all for everything!!!
to go again to Uppsala, drive the familiar way,
to pass the familiar castle, to go to the familiar hospital.
to go down the familiar corridor, to welcome with the familiar nurse.
To talk again with the familiar surgeon, anesthesiologist and doctor Anders.
Again not to able to sleep in the hospital room.
To fall asleep finally at dawn just to be waken up by the nurse: it's time!
To prepare Leo.
Wash, disinfect, sterilize his bed.
Not to give him anything to eat nor drink.
To take him out of the room with the smile on your face,
that this is kind of funny to ride on a hospital bed through the corridors...
It all took place just recently.
Still the memories of the elevator and the corridor leading to the surgical ward have not faded away.
Again you have to put on sterile apron, cap and plastic slippers,
take Leo into your arms and, pretending as if it was completely normal, lie him down on the operating table.
And then you have to watch how they inject a cannula into his hand,
and make him laugh, and calm him down, until he falls asleep.
Suddenly and deeply.
And then you have to wait.
To go to the city again, where again it was raining, to kill time,
to wander around the familiar streets, to drink tea, watch the shop windows,
talk about war in Syria, but having your thoughts somewhere completely elsewhere...
And then suddenly the end of routine.
It appears that this scenario is different,
because nothing really happens exactly the same for the second time.
Now it's another story!
The phone rang!
It was doctor Anders!
The operation was over! The best possible thing had happened - it was the fault of receiver,
you could just change it to a new one and leave Leonerves in peace.
They did just one small cut, the operation has a very small range!
They are now waking him up!
- all hot and pink, restless, aching,
unable to find a safe place or a comfortable position.
Like a little pig on the grill.
The waking up lasted longer than before.
Leo ended up at ICU.
He got the morphine and fell asleep, connected to a ventilator and extra oxygen.
He slept for a long time.
And then he woke up.
- I want to draw! - he said and he drew from his memory the whole map of Europe.
He ate a sandwich with cheese and drank some juice.
- So, are you going with me to my home tonight?
Leoparents were completely suprised that they could leave the hospital so soon, but they agreed willingly!
Leo had a dinner in a cosy kitchen of Anders and Helen.
He spent the night in a huge bed, nestled between Leoparents and connected to the pacers,
which worked just marvelous!!!
All night long!
Leoparents had just finished packing.
The next day early morning they were all supposed to go.
To have another Leooperation.
- It will be OK - they were comforting each other.
And then a telephone rang.
- Good evening. I'm calling from the airlines X. I would like to inform you that your tomorrow flight to Stockholm at 7:45 am is cancelled.
You can take the next flight, at 4:45 pm. You will be at 6:30 pm at Stockholm airport.
- It's impossible. We have to be in Uppsala at noon.
- I understand. Unfortunately, I cannot offer you a flight with other airlines,
because you don't have a permission to use a ventilator onboard other airlines.
The paper! Again it's about the paper!! The fucking paper, which can be a reason of not doing the operation.
This moment that we were all waiting for, can be postponed for who knows how long.
All this effort and stress will go in vain. Because of the stupid paper, that Leoparents in fact already have,
but it is signed by the airlines X, not Y.
As usual, it is not about safety of the child nor the passengers.
It is again all about the fucking, stupid regulation, the signature, the paper, the formality,
behind which the crowd of mindless and coward martinets is hiding
- though Leomum, and then she exploded!
And she must have been very convincing in this explosion.
- I will try to arrange something - promised the Lady at the phone and she really did, because after half an hour she called back.
- Would it be possible if you had a transfer in Copenhagen?
Yes, it would be possible, so the Lady said she would try to arrange the most important thing: the paper.
Then the Man called.
- You have lied to us!!! You wrote that your child needs a ventilator while asleep,
and now you say he needs it also during the flight!
- Well, it happens that people sleep during a flight (you idiot!!!),
especially when it is 5 am and they are 5 years old - this time it was Leodad who exploded.
- Well yes. Then we will call at 4 am with the information,
whether you fly via Munich (at 6 am) or Copenhagen (7:20 am). With the airlines Y or Z
Leoparents didn't sleep for the whole night.
Twice as nervous.
By the operation and the possibility of cancelling it.
At 4 am the telephone was silent.
At 4:15 am they called by themselves to the airlines.
Of course, there was another Lady, who didn't know anything about this case. And she didn't understand anything.
You had to explode again, to speak with someone who did.
- Please, come to the airport. Now. We will see what we can do about this - said another Man.
- Now? We should wake up our child at 4 am? Child dependent on the ventilator? Just to see?
Can't you (AAAAA!!!!) "see" this now?
It appeared you cannot.
- It all depends on the worker of the airlines Y, who initially does not see any problems.
So Leoparents woke Leo in the middle of the night.
And went to the airport.
But at the destination, it appeared that the Worker saw indeed some problems.
- I cannot make this decision.
- So why did we come here?
- You have to wait for the specialist. He will be available at 6:30 am.
- But the plane is departing at 6 am.
- But I cannot.
- But we have to.
- But I don't know if you can travel with such a device.
- The ventilator has an official FAA approval. It had been already used on many flights.
- But I don't have an official permission.
- But we have the permission. The ventilator has the permission.
- But I cannot...
Leomum had to explode again, and be unpleasant.
And then she had to stay in that condition for a longer period of time,
to eventually become a bit nicer and listen to many crap advices,
as for example directives of a airlines doctor who suggested to pinch Leo during the whole flight,
so that he would not fall asleep. So that we would not have to use a ventilator.
For the next 5 hours.
- Of course, we will pinch him! - ensured Leoparents.
And then they finally were allowed to go onboard the plane.
Exhausted and angry.
They did not pinch Leo.
They were stroking him, so that he could peacefully fall asleep
and rest after all this stress and almost sleepless night.
The ventilator was on.
The plane didn't crash.
Nobody was hurt.
So can you do it without THE paper?
Yes, you can!
This time they went to Germany, being invited by the German CCHS Association,
and they took part in the meeting of CCHS families and doctors.
Both for Leo, and Leoparents, such events are great experiences.
Leo met children with tracheostomy and pacers (!),
he took part in group plays, he even tried to communicate in english (!).
And Leoparents confirmed their conviction,
that CCHS is just a capacious sack,
full of various different cases.
And, even today, it is hard to guess,
how Leo will end up in the future...
Leoparents brought back some medical news related to CCHS.
They all will appear soon on the website of Polish CCHS Foundation.
In the morning and in the evening.
Leoparents spread a medical ointment onto Leo's after-surgery scars.
Two on the left side and two on the right side.
Two at the top and two lower ones.
Two smaller and two bigger ones.
The effects were very good.
The scars flattened and faded.
The top ones almost disappeared.
And now again we have to scar Leobody.
To make another cuts.
One bigger, one smaller.
It will put Leobody in the asymmetry.
Will the new scars be able to heal the same way as the old ones?
It is now confirmed, what Leoparents instinctively thought.
It is now confirmed, what the producer told was impossible.
It is now confirmed that the thing that got broke is inside the pacer, it's not in the external device.
It's not the transmitter, it's not any of the antennas.
It's something that is implanted.
It's either wire or the connector or the receiver.
Hopefully it's not the nerve.
At least we stick onto that.
It means another operation.
Another medical examination.
Leo bore this information with dignity and calm.
Leoparents slightly worse.
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.