October 5th, 2012 - part 2
Shortly after the double exchange transfusion had begun, we got the news that Matilda was officially listed for a transplant. I wrote this on Facebook:
We just got the official call that Matilda has been placed at the top of the liver transplant list (1A). Let's all pray that we have time to let this treatment work before we have to make a decision on transplantation.
Sharon was our nurse that day, which was perfect. She had noticed at this point that we were living in the hospital, we were far away from family, and feeling a bit distraught. We had Sharon the most out of all the nurses. She took care of Matilda, but really she took care of us. She checked in with our physical and mental health often and on days when we needed it the most, she told us that everything was going to be fine in a way that made us believe her.
When it was time for Matilda's MRI, I remember going down with Sharon. I had planned on staying with Matilda, yet, upon our arrival it was made clear to me that I would have to wait upstairs in the PICU. I was exhausted, overwhelmed, and afraid. Sharon and I were basically standing in a hallway passing Matilda off to a different nurse and anesthesiologist. It did not sit with me well. I was nervous, uncomfortable, and uneasy. Sharon recognized this and shushed all the chatter. She made everyone stop and take note that I was the mother of this little Matilda. She made everyone involved reassure me that Matilda would be in good hands. As we walked back to the PICU without my baby, Sharon told me that she felt good about the situation and would feel even better if Tyler and I took this opportunity to leave the hospital and check into the Ronald McDonald House.
I was a mess. We didn't think the walk would take that long, but it did. It took 45 minutes of brisk walking in flip-flops. As soon as we got there I wanted to turn around and start walking back. My hand remained tightly gripped to my phone, hoping it would not ring. The check-in process seemed to take forever and included a tour of the apartment building. I regret my solemn demeanor and stiff behavior, but I could not muster an ounce of happiness or gratitude. I could not pretend that I was glad to be there because all I wanted to do was leave. We showered quickly, changed our clothes, and were thankful that the shuttle bus driver offered to take us back.
We made it back just as the shift was changing. It was 7p and Matilda was still in her MRI. I was relieved that we were there, but now the waiting burdened my shoulders with a new weight. I wrote this on Facebook:
Matilda has been undergoing an MRI since 4:30p. Everyone encouraged us to leave the hospital since we could not be with her anyway. So we took the opportunity to check-in to the Ronald McDonald House. They are making an exception for us (usually only available for cancer patients) because they had a ten day opening. I cannot imagine leaving Matilda overnight; leaving for a couple hours was almost too much to bear, but it will be nice to have a place to shower. It was really nice and warm. Once Matilda is back, we will continue the transfusion that will last long into the night. I miss her and hope they bring her back soon.I could not shake this sinking feeling that something was going wrong. When they finally brought her back around 11p, my excitement quickly turned to fear as I wrote this on Facebook:
Just brought her back. She is having trouble breathing. Please pray.
