Well it is becoming more of a reality that we will be going home on Tuesday, but will be returning on Friday for the sleep study. Hopefully that will only be overnight, but we never plan to go home on anyone’s schedule. We have learned too many times things come up or “happen.” It cuts down on the disappointment. There was an opening for tonight, but they would not take Elias because he is to complex. The doctor put it like this, “It doesn’t look like the sleep study is going to happen this weekend. There is an opening though, but they requested a less complex patient.” Yes, that is really what he said. I suppose I can understand that, but really what difference is it going to make tonight versus Friday? I guess it is not fair to be judgmental when we do not know what all goes into this study. So I’ll save my rant for afterward if warranted. I just think it could have been phrased or presented a little different.
The second reality that is becoming apparent is that we are more than likely going to walk out of here with parting-gifts and not the grand prize of a reason behind the episodes. While it is wonderful that Elias has not continued to have this problem it does create a little anxiety on our part. Will it happen again? Was it isolated? We will probably need to be a bit more vigilant at least for a short period which means watching Elias closer than we already are, if that is even possible. It would just be nice for once to have a clear answer on something rather than the typical ambiguity.
I did neglect to mention yesterday that in our conversation with the neurologist we actually got a reasonable response to our question of why we are doing a sleep study when all of Elias episodes (with one exception) have been when he was awake. The sleep study is about studying the central nervous system. Many behavior indicators can be seen during this type of study. It can give a clearer picture how that system is engaging the body even when we are awake. That made sense and we wondered why it took so long to get that response. So the bronchoscopy tomorrow and the sleep study next Friday are our last best hope to finding answers. Thank you all so much for all of your thoughts & prayers.