We have had to make a whole lot of terrible decisions during Nathan’s battle. Decisions that no parent should have to make about the life of their child.
It seems they just get harder and harder.
Nathan is currently dependent on platelet transfusions. He needs a transfusion every 5 days.
So – today the doctor (not his regular doctor) asked me if we wanted to transfuse. The alternative is for Nathan to hemorrage to death. Nathan was sitting there in the room so we had to speak obliquely about things but I basically said that it would depend on what else Nathan was likely to die from. However, we couldn’t really have that conversation and I just said that I thought we wouldn’t want him to bleed to death.
So – I guess it is coming to the time when we need to decide how Nathan will die. Bleed to death? Infection? (forgo a preventative antibiotic he has been getting) I think the usual thing to happen is a tumor takes over the abdomen or liver and and shuts down the vital organs. We don’t even know if he has any such tumors. We do know he can’t go on hospice and get the services they provide while he is still getting transfusions but I am thinking if we stop transfusing we won’t have much time to need their services anyway. I have no idea if bleeding to death is a bad way to die. Doesn’t sound good to me.
Anyway – it is all just awful. It is worse right now because we have very little information from the doctors and we hope to remedy that soon.