Today, Ash spent her morning and afternoon splashing and playing on the front walk. This evening she is sitting in the ER waiting to see if her line is going to draw back. Dave is with her and I stayed at the house. Not an easy thing for me to do. Him either. We aren't very good at role reversal. Although, this visit doesn't cause her any discomfort. I think that makes it a little easier. She was nervous, but is now laughing and playing with her daddy as the TPA sits inside her line. It worked last week and we are hopeful it will work once again. We are also hopeful it will last a little longer than just a week.
The clotting of the line could mean a few different things. It could simply have a small clot of blood blocking return flow out of the catheter. It could also have a fibron sheath formed at the end of the catheter making infusing possible because it pushes the sheath open, but drawing not possible because it draws the sheath closed at the end of the catheter. It could be that the line has slipped out of its intended place. Or it could be that its just getting old and not working like it was intended. On the screen last week in IR we watched dye flow through it and could see the placement was still where it needed to be. We also could did not see a fibron sheath on the end of the catheter. So...we aren't sure why it continues to act up. We just aren't sure. The only thing we are sure of is that this line is ESSENTIAL to Ash's life. Once its lost, then we too have lost. Lost opportunity to re transplant and lost her battle.
The smile on that face pictured above is something we just aren't willing to lose. Thank you for your prayers.