Just when you think things can't get worse, they inevitably do.
It could not have been more than two hours since a stranger drove off with my little boy that the lab called. Grey had needed one more blood test to confirm his diagnoses of Krabbes Disease. My husband took him on Tuesday, all the way to San Antonio, where hospital staff was awaiting him. Not that it was bad enough that he even had to have another test, given the little amount of time he had with us, but the only place they could find a vein was in his head. Thank God I wasn't there. The sample was sent off to California. However, the lab in SA used a tube dated 4 days earlier. On it's arrival, California disposed of it, because the sample was too old.
Because his diagnosis was presumed, not confirmed, our doctor felt we would have issues when trying to advocate for newborn screening for the disease. This meant that Grey would have to have an autopsy, something we had tried desperately to avoid. They would need to biopsy white matter from his brain. The expense would be astronomical and when we told the lab that messed up that they should pay for it, they told us we could get a lawyer.
We met with the funeral director today. He is an incredible man. He had picked Grey up yesterday. He cried when he saw him, something that he is trained not to do. Had he not cried, I probably would have never let him take Grey. Anyways, he told us that we could petition our JP for a state mandated autopsy, if she felt his death was unresolved, but that it would be hard to do. That means the state would have to pay for it. Just then, Bill's little sister called and Bill told her what we were going through. Little did we realize that Bill's sister's husband was our JP's nephew. That's right, we had gone to family functions with her and not even realized who she was or what she did. She was at the funeral home within 10 minutes, signing papers to have Grey's autopsy done immediately. It will happen in the morning. We will have the final diagnosis within days.
Sadly, the approval of our son's autopsy was the best news we had gotten in days.
I know that no matter how long I live, and no matter what I go through, NOTHING will be worse than where I am now. My heart hurts. Whenever I hear laughter, I wonder who could possibly be laughing at a time like this. But I keep telling myself, I am not going to be that angry mother who lost her baby.