I apologize for not updating sooner, but my attention is otherwise, as you may well imagine. Last night was long and without sleep for me and Drew. We had to give Alex pain medicine every four hours to keep her comfortable. The hospice nurse and social worker came this morning at 9am. They sat down with us, we answered the appropriate questions and got a few answers ourselves. She was admitted into the hospice program and the nurse and social worker left. They were just the admitting staff, so the nurse that is technically assigned to Alex is due to come tomorrow. Still the nurse this morning was nice, told us that we could continue all of Alex’s medications and we are supposed to have more pain medication delivered this afternoon. Here’s hoping they aren’t late with that, because the small amount that the pediatrician prescribed is gone and she will likely need another dose around 4pm.
In case you didn’t know, here is how hospice works… there isn’t anyone in our home. There is a nurse, social worker and nurse’s aide on call to us and, if we were expecting for this to be a more lengthy situation, then they would come multiple times a week. The hospice number is available to us around the clock so that we can reach help whenever we may need it. Otherwise, Drew & I are here with Alex and running the show, so to speak.
Now, for how Alex is doing. Not well. The nurse confirmed what Drew & I already knew, which is that her breathing has long periods of apnea (no breathing), she has the rattle sound when she breathes now and that these things are indications of the final stage of dying. As I’ve said before, only God has a timeline, but it was suggested that we quite likely have only hours left with Alex. Since the nurses left, Alex has continued to struggle to breathe, taking long (20-40 second) gaps between breaths. The breaths that she is taking are quite shallow and very labored. Her color is changing and we have had a couple of instances when she couldn’t breathe at all and we were sure that the end was very near. In true Alex style, she’s super tough and not willing to give up just yet. Her comfort remains priority and Drew & I are just trying to be patient as we hold our daughter and wait for God’s perfect timing.