Yesterday they tried to wean Benjamin off the ECMO using the conventional ventilator. However, it didn't work. His oxygen levels are ok but he is having a hard time blowing off his CO2 (carbon dioxide). They are now trying the oscillating ventilator to see if that will help him. Right now they are changing the circuit of his ECMO machine since it has a few clots in it and lot of fibres (stringy clots). We're trying not to worry too much since it doesn't actually take that long to do but yet it is a very big thing.
We're trying to be patient as he is not getting better as fast as we were hoping. It's still a very big rollercoaster. It seems like one day we get good news and the next day it isn't as good. Our emotions are very up & down.
Yesterday he took a baby step forward but today he is staying the same but at least he didn't go backwards. We still sleep with one ear open listening for the phone & always wondering if the call is going to come.