I'm feeling "blue" today so this is the day to close my chapter on our lives during the days of our son's liver transplant. Here are some excerpts from my "journal" of that time period written in blue text:
Monday, September 14, 1998
I feel very down and blue. Waiting for something out of my control has never been easy for me but today IS SO HARD. I feel like it will be a very, very, long wait and wonder if Adam will make it. I know that God is holding on to us and will take care of us whatever happens. But a mother never wants to think about losing a child at any point let alone in early childhood. There are times when I force myself to imagine what it would be like to go through a funeral and how God would carry us but I don't really want to think that will happen. But I know it could be a reality so I must consider it.
That night we had a "false alarm" in which we got a call that there was an organ available for transplant but it turned out not to work for us before we even left the house.
We send the grandparents home and send Adam back to bed as we attempt to put this behind us. We talk about how disappointing it is and yet how totally unready we felt to go tonight. Besides, while we are merely disappointed, another family is experiencing the devastation of losing their 19 year old son. Not much sleeping this night.
A few days later we are returning from a junior high football game.
On the ride home in the dark I cry for all that needs to be cried about and hope that before the weekend is over we will be in KC having surgery. But it felt more like I was crying for someone who died or who could die. It felt like grief.
September 18, 1998
7:15 a.m. and the bus will be here in five minutes. The phone rings and unbelievably it is Kathy Bendorf. She says, "We have another potential donor for Adam and this one looks better suited for him." Suddenly we are in high gear........
On our way to Kansas City around 9:30 a.m. I was suddenly overcome with grief for the donor family. How could we do this? How could we be excited when someone else is saying goodbye to their child? I had to put the surgery out of my mind and just concentrate on praying for that family. I prayed that God would comfort them during this horrible time for them............
It would take a book to write all the experiences of that day and I'm not really up for that and no one would want to read it anyway. So I will give the life filled ending to our story in the next excerpts:
While we wait to be admitted I notice the pre-admitting info that the clerk has next to her. It says: end stage liver disease. The weight of that statement grieves me and yet I am thankful we are right where we are at this moment and awaiting the possible cure........
Before long Dr. Forster (the head surgeon) comes in and I get to meet him for the first time. I like him. He tells us that everything looks good for the surgery and that the organ is a good match. We discuss what time the surgery will take place and he says that it will be sooner rather than later as we had been told. This happened around 1:30 in the afternoon. He says that the donor was in surgery at 9:30 that morning for the organ procurement and I realize that this was the specific time that I had felt God's impression on me to pray for the family. God is so good!..........
Not everything happened the way we had hoped it would and the surgery was being held in a different hospital than what we had planned for it. This meant that our coordinator that we loved and felt safe with would not be in the surgery with Adam. She had promised to hold his hand. Kathy had a son Adam's age and felt particularly maternal towards him. It upset me that she couldn't be there with him. But in a way she was.........
We sit and wait and we talk in the waiting room. The air is charged and there seems a camaraderie with other families there. When you become part of the "hospital waiting room brigade" you see life through another prism. Soon our dear friends arrived to sit with us. We had not heard anything from the charge nurse even though he had said he would update us. Soon the waiting room phones rings and it is Kathy! "I guess he's doing really great," she tells me. She was calling the OR to get updates herself and let us know what was happening!
We were told it would be a 10-14 hour surgery. I couldn't even wrap my mind around that at the time. But it was only a miraculous 4 hours later that we were given a report from the surgeon and told that as soon as possible we could go back to the SICU to see our son.
Dr. Forster comes to talk to us and he tells us that everything went so well and that the liver was a perfect fit. He said that even the vessels were all the same size and fit together like they were made for each other. He tells us that Adam's old liver was ugly. For some reason I am so relieved. Part of me wants to see that ugly liver.
We stayed up all night watching Adam in his SICU room which was amazingly technical and dark. There are so many things that happened to us and to him over the next weeks but I will simply close out this post with these words from October 1, 1998 when we were ultimately able to go home, grocery bag full of medications in hand.
Friday, October 1, 1998
Today we are going home!!!!!! I clean our room at Ronald McDonald house, pack the van and get ready to go. Craig is meeting us up in north Kansas City for lunch and then we will head for home.
I can't wait to see the other kids when they get off the bus. This has been such a long haul but we are so grateful for God's provision and grace. Though it seems like the big stuff is behind us we know that each day will bring new challenges as we deal with medications, insurance and recovery for the rest of our lives. What seems like an ending is really a beginning. I'm SO glad it is!