Eight months ago, I began sleeping with my phone beside my bed. The last thing I do at night is check that the volume is up all of the way. At that point in time, I was waiting for a call from the PICU for a ‘you need to come up here now’ or a ‘we need verbal authorization to do this dangerous procedure’. All of that changed in August. That is when Matthew was listed for transplant and ‘the call’ could come at any moment. Now I sleep with my phone next to the bed anticipating a phone call that takes us to Georgetown University Hospital; a call that heals Matthew.
Well, almost two weeks ago, that call came. It went sort of like I expected it to. At 7AM the phone rang. I recognized the area code and stopped breathing. As the lady on the phone is telling me that they have found a potential liver for Matthew, I’m shaking Rusty whispering “It’s DC.” and he’s very slowly gaining consciousness. Well the call ended with her telling us that things would drag on throughout the day and that we should just sit tight for a while. So, Rusty went to work and I went about getting the girls ready for the day… for about 2 hours. Around 9 we got a second call asking us to head out the door. I notified everyone that needed to know in our ‘escape plan’ and then turned towards packing, at which point my mind went completely blank. I stood there, staring at the list of things to pack that I had written 7 months ago and couldn’t get my brain to process the words. Finally, I just started grabbing things and throwing them in to a suitcase and eventually my mind cleared.
false alarm day
The day was surreal. Matthew was full of smiles and chatter; more so than he had ever been. His sisters were super cooperative and happy. Everyone involved in the process responded quickly and the things just rolled incredibly smoothly. Even the drive was smooth. Matthew didn’t make a sound the entire drive. There wasn’t a car on the road. It was like that scene from Bruce Almighty, when he clears the clogged street so that he can drive past the traffic. Everything was perfect. Rusty and I were calm about the process and excited about the changes it would bring (and nervous about the changes it would bring). We checked in to the hospital. Matthew began his labs and the list of other pre-surgery checks. And, we settled in to wait. We had been told that the surgery would start around 2 AM but that Matthew’s prep would start at 1AM. We expected an 8 hour surgery, so we went to bed early to rest up for the early and nerve-racking morning. At 4 AM, we both woke up to find Matthew still in the room. Hmm. That’s strange. Maybe surgery got delayed. We found a nurse, who found a doctor who told us that the surgery had been cancelled, and then found a surgeon to talk to us about it.
The surgeon explained that the team member retrieving the donor’s liver found an anatomical anomaly that made it not a good organ for transplant. As we understand it, when the donor’s liver was forming, one of the veins had wrapped itself around the liver, creating an end point location that is slightly off from a typical liver. The donor’s liver functioned perfectly for him or her. However, trying to manipulate that vein to fit Matthew would have greatly increased his chances for clotting and rejection, and for needing a second transplant. The team was very kind and apologetic. They kept saying they were sorry and giving us sad faces or hugs.
Here’s the thing. Yes we are disappointed that this long, long awaited transplant didn’t happen, but we are not sad about it. In fact, we are very happy about how things developed. We are glad that we had a trial run. Glad that everyone was able to scramble together at the last second. Glad that the girls didn’t have any transition problems into a new house with new rules and new bedtime routines. Glad that we now know what to expect in the hours leading up to transplant. But more than any of that, we are so very glad that his team of surgeons didn’t try to force something to work that wasn’t the safest possible option. We are very thankful for a team that is taking their time and being picky, a team that is searching for the perfect liver for Matthew.
But, um, Perfect Liver, my house is clean and the bags are ready and the kinks in the plan are all worked out… so, you can go ahead and show up now. Please and thank you.