Yesterday was a much better day for Elias and us. They lowered his settings on the ventilator and it seemed to instantly make him more comfortable. They played with a few things throughout the day trying to learn him. He was very happy and gave out a few smiles and lots of raspberries. That made our day! The pulmonary attending talked with us awhile about the process and the plan. There are many variables in the process, most of which are uncontrollable. Elias is the first variable, how quickly does he and his body want to move and accept change. Second is the resources needed at home to ensure Elias safety, particularly nursing which yesterday we made some head way with today, not much but at least a step in the right direction. We also have to get Elias switched from the hospital grade equipment to the home grade and tweak his settings. There can be an adjustment period for that. Over all we have set a semi-realistic goal of 4-6 weeks in our minds since the doctors do not want to commit to anything. Things could move quicker. Elias has certainly done better than they expected in the last 24 hours so that is positive. The biggest uncontrollable variable will be the nursing scenario.
Moving on…Today was pretty positive again as Elias did so well on the Si Pap trial today that they are going to leave him on overnight. If he does well overnight and tomorrow they will attempt to go down on his pressure volumes. Elias has sort of been low key, but in a much more normal way if that makes any sense to anyone but us. The only other thing to briefly mention is that the G-tube is still leaking profusely. The stoma is too enlarged. They will make a decision what to do tomorrow, more than likely another NJ tube to let the stoma rest and retract. It is not a happy topic with us right now and we will leave it at that. If you really want to know just ask and we will tell you! Well here is to hoping that Elias has more of the same success he has had the last few days. Thank you all again for the thoughts and prayers, they are obviously working so please do not stop!