Ramblings of Hope

Yesterday, we got the call. As in THE CALL. The "possible liver" transplant call. It happened while we were already at Boston Children's Hospital with Hope's sisters who were getting transfused. There is not a way to describe the feeling of receiving that call. There are so many mixed emotions. Excitement for the possibility. Relief that my baby's suffering might be ending through the gift of transplant. Sadness for the family whose great loss is gain for another. Gratitude for the donor family for choosing life. Panic at the prospect of a 10 hour transplant surgery. Awe of God's goodness and provision. All entwined together in one moment. Layered upon that was the knowledge that my baby is sick with a cold and ear infection, and the disappointment that it likely is not meant to be. And the hope that maybe, just maybe, the doctors who would come to examine Hope would say she is well enough to undergo the surgery. Hope that maybe it was, meant to be.

As I explained to our transplant coordinator what has happened since Hope became sick Saturday night, I could hear the concern in her voice. She explained that she would call the surgeon. She would call back. I quickly told the nurses who were caring for my other two daughters what was happening. Oh those nurses. These amazing women who love on our family every three weeks on transfusion day. They knew the magnitude of what was happening. I didn't even need to say. They surrounded me and my children. They distracted and played. In their eyes I saw the emotions. The hope. The fear. The concern. The care. The support. They got it. They knew. One of our dear nurses looked at me when the room was a bit emptier. She tenderly said, "her lungs are so important for this surgery. So, so important." She had heard my baby daughter cough. She had heard her wheeze. And she reminded me of truth. She prepared me.

Soon two doctors came into the room. Hope beamed her huge smile as if to say "maybe I am ok for this?". They asked me what had been happening. They listened to her lungs. I could see the concern on their faces. I knew. Dr Elisofon looked at me. He explained how the risk is just too great with her in this condition. Risk of anesthesia. Risk of necessary immunosuppression. As much as we all wanted her to receive the gift, it wasn't meant to be.

They wanted to run a virus panel (RSV had already been ruled out by our beloved pedi, impressing the team) and get a chest X-ray. And then they were gone. But those nurses, oh the nurses of the CATCR where my girls are transfused, they knew. They understood. They were so sad for us. I told them I was on the roller coaster and wanted off. One said we are not just on any roller coaster. We are on the upside down terror coaster. Flying fast and in all directions.

In the midst of all of this, one of my dearest friend reminded me to seek the mercies. The mercies that are so clearly there. Our team. Our nurses. Our family. Our friends. Our living donor who is willing to come out for transplant surgery where she will donate the tip of her liver on November 18th. All mercies.

Because Hope's liver is so sick at this point, making it hard to breathe, sit, move, eat, and sleep, her team has said we will take the first perfect liver available. I do not know what this means. I do not know how this story will unfold. Will she receive her living donor's liver? Or will it be something sooner? Only God knows. And I need to trust that He knows best.

Driving home I complained to God. It is so hard watching my baby be so sick. I wanted her gift to happen, and it was hard going through what had happened that afternoon. Really HARD. As we got settled back at home, there was a message waiting for me. Another true mercy to remind me that God knew and understood. One of the sweetest young souls I know in this world said that she was reminded of me just that morning as she read Psalm 27:14 "Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD." This came minutes after a text from my wise counsel who said she thought I was so, so brave. Even though I don't feel brave, I knew. I am to continue to be patient and trust. And I can celebrate that another mother got the call. Someone else's very sick baby received a miracle gift last night. Thank you God.