After the surgery...

So our boy went to PICU after surgery. The transplant team was assembling in the hallway for rounds. I felt so bad for them. I could see that they were taking this very hard. Seeing the tears in their eyes, I wanted to comfort them all, but I just felt like a piece of wood. I couldn't cry or be angry or sad.

He did survive the surgery.

The day after surgery was Friday, February 20. He slept all day with the aid of Fentanyl and Ativan. He was in so much pain he did not want to talk when he was awake. I still hadn't talked to anyone in my family or any friends. I just couldn't talk about it and just couldn't answer questions or tell the story.

Saturday, February 21. My friend Jenni came to support Isaiah and me. She got there late Friday night. We got to talk about everything and I'm glad I talked about it with her. It made it easier to do what I had to do...tell Isaiah. Obviously he did not know what happened during surgery. He thought that he would come out of surgery "fixed" somehow. I am not exaggerating when I say that telling Isaiah what had happened was the hardest thing I have ever had to do in my life. I knew that the moment would come sometime that day and it did...I thought he was asleep and could not hear me because I was talking softly. He heard the word "transplant" and was instantly awake and alert. I sat down on the hospital bed and looked into his eyes. He looked back at me and asked, "Mama, am I going to have another transplant??" I couldn't speak, so I nodded and the tears that wouldn't come before were there. The tears rolled down his cheeks and he began to cry. He yelled, "NOOOOOO!!" over and over until the nurse came in to see what was going on. I explained that when he went to surgery, his insides were all covered with scar tissue and were not working correctly. I explained that he now had a new central line and would be coming home on IV nutrition (TPN) again. I explained that he would have a tube coming from his tummy draining into a bag until he received a new transplant. I exlained that he could eat and drink again one day, but that it would come right back out. I told him that he would not get his transplant right now. I will NEVER forget that moment or the conversation that we had later that night. I feel like a part of me died in the telling. I am a coward. I couldn't bear to tell him that he would not get to play baseball this year or swim.

Later that night, he asked me why I was crying before when we talked. I explained that it made me sad to see him hurting and sad and that I wish he did not need another transplant either. I told him that he would never be alone and I named every name of someone he knew and said that they would all be there to help us in some way. I explained to him that God would guide us through this just like before and he said, "I know, God has his hand on me." and closed his eyes. I felt so relieved. I was so afraid that he would say that he wanted to die or that he wanted to go to Heaven to be with his friend. I didn't hear either of those things and I was so very thankful to God for sheltering my son and showing him a future.