October 23rd, 2012 - constructively arguing
Our first half of the day was spent participating in a lecture. Matilda was the case study, and we were more than happy to have the company. The second half of the day was spent listening to a group of doctors argue... constructively.
We trusted our doctors and were happy that they felt comfortable around us speak openly. We respected that they were passionate about making the right decisions. And we were thankful that they brainstormed as a group.
Matilda had a central line (explanation here) in her leg that had been expired for a while now. Some of the doctors wanted it out right away. The nurses wanted it out immediately. Some of the doctors wanted to send Matilda to the OR to get a different line placed. And a few of the doctors wanted to hold off in hopes that Matilda would receive a donor liver soon. Each had valid reasons; each had serious consequences. There was no right answer.
I wanted the line out. As a mom, the word expiration means you should take action to get rid of the expired item. I didn't want an infection to take her off the list. I didn't want to chance anything taking my girl away. But I am not a doctor, and do not pretend to know what is best.
It was a day spent with all of Matilda's doctors working hard, but in the end nothing was decided. Time simply ran out. That was one of the most frustrating things about hospital life. Some days, time was the king and other days time stood still.
And as we were settling in for a quiet night ahead, we were given one more piece of information. Something that danced in my mind for weeks. Matilda was at the top of the transplant waiting list, not just for our hospital, not just for our state, not just for our region, but in all the regions she was eligible. It was a blessing to know she would get the next available donation. It was a curse because that meant she was the sickest baby in need.
We held her hand. We reminded her that she is mighty. We prayed.
