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.
PS. OUR ONLINE AUCTIONS STILL LAST!!! ALL THE MONEY FROM THEM GOES TO FUNDING THE CURE FOR CCHS!
THIS CURE MUST BE FOUND! BECAUSE IT CANNOT BE ALWAYS LIKE THAT!!!!
Story of a brave little boy Leo, who keeps fighting with a curse of a cruel goddess Ondine.
Children with CCHS in Poland
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