Intensive care unit has moved from the hospital to our home.
We spend time getting accustomed to the new situation; on rehabilitation (4 times a week),
medical consultations (gastroenterologist, laryngologist, neurologist, immunologist, phoniatrist,
cardiologist, logopedist, audiologist…),
and struggles with the equipment that breaks down all the time.
Hospital was a nightmare, but being at home isn’t easier at all...
Nights are the worst.
Leo can disconnect from the ventilator even every 10 minutes.
Plus he’s labile, which means we need to change the equipment settings several times a night.
Also, as any other child, sometimes he wants to eat, sometimes he has gripes,
and other times his nappy needs to be changed…
It happens that we need to get up to attend to him around twenty times (or is it even more?).
During the day he can’t be let out of sight, too.
As every baby he takes naps a lot.
And each nap can be fatal.
