We got "the call" yesterday morning (Monday). Even after seven months of anticipation, we were not prepared for the rush of conflicting emotions we experienced when we realized that out of the tragedy felt by a young girl’s family in Detroit, our family has a second chance. We ask that you please keep the donor’s family in your thoughts and prayers. Their thoughtfulness and generosity is giving new hope to at least two other families this morning. It turns out that the donor was also a match for a child in need of a liver, which the doctors said Amanda did not need. Two teams traveled to the University of Michigan’s hospital, while we traveled to Jackson Memorial in Miami. By coincidence, Amanda was already scheduled to go to Jackson for a week to change out her medi-port. We decided not to tell her anything about the transplant until we got confirmation from the team, because there were still several reasons why it might not happen. Among other things, the organs might not have been viable, and the liver recipient, who had higher priority, might have needed tissue that Amanda also needed. Amanda waited impatiently, despite the best efforts of Lela and Lelo and Aunt Sandra, and was uncomfortable with the change in surroundings. It helped a bit, we think, when we introduced her to Trevor, her roommate for the day. This three year old had had a multivisceral transplant a year and a half ago. As she looked over, she saw that Trevor was eating a donut and a tiny smile crossed her face. We’d already talked about all the food she’ll be able to eat when all this is over, but it was good for her to see success face to face.
It was not until around 8PM that we got the final word: we were a go. Now it was time to tell Amanda. As any kid would, she panicked. She said she wasn’t ready, it was too soon. She asked how we would feel if they took out a part of us that we had for all our life. She asked if she will be "different". But mainly, just "why me?". There’s no good answer to those sorts of questions. How do explain to a child that life isn’t fair? Maybe Amanda has been through enough that she knows it already, because by the time we left her at 9PM, she was joking with the anesthesiologists in the OR. And she said she was ready.
The hours since then have been filled with waiting, and status reports.
10:30: The anesthesiologist reports that they had a much easier time getting lines in than they had expected, given Amanda’s small veins.
12:00: Everything going as planned. We saw as the organs arrived and were carried up to the OR. The surgeons have been cleaning out old scar tissue and adhesions. They have begun removing the bowel.
2:30: Still on schedule. Amanda’s organs have now all been removed and they are starting to place the donor’s organs.
5:30: The team leader, Dr. Tzakis, came down to talk to us. He’s done dozens of these types of transplants, and the news is mostly good. First however, he told us that there was more damage to the liver than he was expecting. Every week on TPNs, the nutrient fluid we’ve had to give Amanda for two years, killed a little bit more of her liver. If the transplant had happened much later, Amanda might have needed a liver as well as the stomach, lower intestine, and pancreas they were replacing tonight. But, Dr. Tzakis felt that the damage was not irreparable, because the liver does have the ability to partially heal itself. Also, he let us know that he had decided to replace Amanda’s spleen as well, as he feels it is important for venous drainage of the stomach, in kids especially. And, they had taken out a good part of Amanda’s large intestine as well. She will need a colostomy bag for several months to a year. And, she will still have a feeding tube into her intestine and a central line for meds for a while. But, he expects that if all goes well she can be eating in a month. There were still another five or six hours to go as they finished up, but he was actually leaving because he had another surgery later in the morning and need to get some sleep. We thanked him and breathed a sigh of relief.
There will probably be more anxious moments in our future, but hopefully just as many more sighs of relief. We have no good answers to the whys. Maybe Amanda will teach us herself. Please keep us in your thoughts. We will keep you updated on her progress.