We still seem to be scheduled for PEX for the week of November 2. We booked our tickets and are set to go. I feel a bit like we have gotten the run around too much and that we might not get to go. Dr. L’s office has told me that we are set to go unless there is a problem with insurance, so I should have faith in this. But I’m not able to say we are for sure going. I keep saying “if” we get to go.
I have all my hopes pinned on the PEX procedure that it will restore some calm to our family. That our A will return to us and that all of this stuff will eventually fade away. I think it’s dangerous to put so much faith into one procedure. These are just the fears that go through my mind regularly.
But now I have a new one. I have just read about another family that did PEX a few months ago and had great results from it. But, after a series of unfortunate events, had a setback where PANDAS returned and they are looking to do IVIG again. I don’t know all the details of the story because I don’t know this family personally, but I know enough to be scared to pieces. It drives home the point that I can’t pin all my hopes on PEX. The mom from this other family said that her husband told her that this craziness is their new normal. It takes a lot of energy to sustain this level of normal!!