We are worried. We have been for a month now, but we keep hoping we will see improvement. We keep hoping we aren't seeing what we are seeing. Gwendolyn just isn't herself. She isn't sick. She wants to do and go and see, but her energy is low. She is not coming off bipap for very long. She is struggling to breathe without it. This isn't good.
Gwendolyn has had a pattern throughout her life. She does well for about six months and then she needs increased breathing support. We visit her pulmo, she increases her settings, we go home, she improves, we stop worrying… well less. But now…it is different. In May we were able to switch to the Trilogy with success (Thank God!), but it came with the knowledge that increasing her settings was not infinite. In fact, there is little known about exactly how high we can go because the Trilogy is so new that it isn't yet known how high the machine can be used with a bipap mask. We have room now — we think. But the reality is we are marching toward a limit and that kills us.
We are at Stanford now meeting with her pulmonologist. We are pretty certain our sweet little fighter will tolerate increased settings and we will once go home, see her improve, and we will stop worrying… a little. But we wish this were not our reality.