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