Ash is not well. I arrived home last night to find Ash not well. She was very sick through the night and this morning we were informed of yet another gram negative blood infection.
The plan for today is to admit for blood transfusions. Possibly some albumin. Then to get IV meds on board.
All of this is where we have been many times before, but this time there are new discussions being added to the mix. Tough conversations with no clear answers or even predicted outcomes. Our doctors are to the point of heavily suggesting that her line be pulled. They want more studies, more opinions, more options.
My main concerns are these:
Permanently shutting the door to transplant. A sure death sentence for my daughter.
Pulling the line and they being unsuccessful in placing another one anywhere in her body and her suffering a slow, decline without the opportunity for nutrition. A sure death sentence.
There are NO answers at this time. NO feelings of what we will or can do. NO indication of what the coming days, weeks, or months ahead have in store.
We need a miracle. Again. Another miracle. I'm not to the place of giving up on her future. I'm just not.
This line has been chronically infected since placement. It is the reason for the decline in her health this year. Her kidneys and her liver are no longer able to filter and deal with the effects of such strong antibiotics that are needed to treat the line. The easy thing to do in most situations is to pull out the line. Its not so easy in our situation because there are no options for placement of another line.
We have been put in the most impossible situation. We need something good to happen.