Bram is still in hospital. During the last 2 weeks Bram has been ventilated. A sleep study showed that Bram’s CO2 levels were too high, he was not breathing enough and as a result his lungs are not properly inflating.
To counter this Bram will be ventilated during nap time and at night for the forseeable future. Laura and I have been trained and yesterday we completed the training to care for Bram with his ventilator. We expect Bram to be discharged on Monday, he will come home tomorrow for 24 hours to give it all a test run in the home environment. On Sunday evening Bram will return to have a final check up on monday morning before discharge.
Bram would not be Bram, so he took this all in his stride. He is already having more energy and is now finally able to get up in a sit and stay in a sit. It took him a year but he has finally managed it. A wonky balance won’t stop him and we can already see that he now wants to stand up……
Jeroen, Laura, Max and Bram