Unfortunately Benjamin did not get extubated (the ventilator tube taken out) today:( A doctor came and talked to us. Apparently his oxygen spiked overnight but they don’t really know why. So they didn’t think it was a good idea to extubate him today. They think it was because he had so many secretions (gunk in his tube/lungs) because today they had to keep suctioning him and he was coughing a lot. His oxygen was down when we left there though so they said maybe tomorrow or Wednesday.
The doctor also talked to us about the long-term plan for Benjamin. They really want to get him extubated since he has been on a ventilator now for 61 days. If he doesn’t handle bi-pap (a mask over that nose or nose & mouth that keeps the lungs inflated and gives a continuous blast of oxygen) they plan reintubate Benjamin and talk about doing a trach-vent. This would mean surgery to insert the trach vent into his airway in his neck area. We would need to be trained on this so that he could come home on the trach-vent and home nursing care would also have to be set up. This is a little overwhelming to think about right now, as I’ve never taken care of a ventilator. If he does handle bi-pap they also said that he might be able to come home on that as well. It’s all really up to Benjamin as to what he will handle. If he does come home on a trach vent I’m hoping that we can get S., one of the nurses he had earlier in his life since he knows her and she knows him and she has also done trach vents (I think). This week will most likely tell us what will happen although it could change as well if all of a sudden he gets much better or worse.
Another thing we talked about was preschool and the doctors said that it wouldn’t be a good idea for him to go back in the fall. I’m a little discouraged about this. I know the reasoning for it and all but he really loved preschool. But his lungs need to heal before he can be exposed to all the germs there again. We’re still planning on sending Kyle and then I hope to be able to do some preschool-y things with Benjamin at home as well as his physio etc on the days that Kyle goes.
All the information today was a little overwhelming, especially the trach ventilator. But we don’t really know if he’ll even be on that but just know it is an option. Who knows, when I’m older I might just be an RT or a nurse with all the information I’m learning. But the good news is that we may not have to wait until he's on nose prongs to take our boy home:) Please pray that this week goes smoothly and that all the decisions made are the right ones.