Tuesday, November 19, 2013
Transplants and Train rides
For those that don't know, Michael got his call for new lungs on September 6th and went into the OR at 1:04 am on September 7th. He was in Pittsburgh for almost two months post and came home on Halloween. Now that we are home and I am not in survival mode anymore, it has all hit me what he went through. It was the hardest thing I've ever had to do watching my child go through that. I was blindsided by all the stuff I didn't know and completely overwhelmed and unprepared for the stuff I thought I knew. I've realized there is no way to ever prepare for something of that magnitude and until you go through it, you have no idea what it is going to be like. It took me 45 minutes to work up the courage to see him after surgery. I walked down that hallway many, many times and every single time, I would lose my nerve and turn around because I just couldn't face seeing him like that. When I finally did see him and he was laying in the bed, a raw incision across his chest, blood draining out of him through tubes, hives all over his face from a blood product reaction and attached to a machine that was breathing for him, it literately dropped me to my knees and my first thought was "My God, what have we done??" I didn't know if we had made the right decision and I had so much doubt and confusion. I'm so glad that he was sedated because I was sobbing. I never wanted him to see me scared or confused. Sometimes, he would wake up from sedation and every single time his eyes would be rapidly searching the room and he would be panicked. The anesthesia they gave him had an amnesiac effect and he would forget where he was or what had happened. I had to constantly reassure him that I was there, the surgery was over, he did well and that I was SO incredibly proud of him. One time, they came by with a floor polisher that was really loud and he got really agitated and scared. I had to tell the nurses if they saw the floor polisher coming to close his door. I've never had an experience in my life where I wasn't completely in touch with myself and my emotions and I was just so completely lost through this process. I cried for 3 days straight after he was transplanted and I can't even really tell you why. I don't know if I was scared, thankful, relieved. I don't know. I just know those were the most powerful emotions I had ever felt in my life and I couldn't even define them. I couldn't put a name to them. I had no idea what they were. I felt like I was on a runaway train barreling towards some unknown destination. There were so many things I didn't know about transplant and I wish I had talked to more people that had been through it. I wish I had done more research. I wish I had known more. I always saw transplant as black or white, it either goes well or it doesn't. I didn't know there were so many shades of grey where things can go wrong. One of Michael's doctors described it as a roller coaster ride through the dark because there are ups and downs and you don't know when they are coming. I think that's a good analogy When we were going through the transplant process everything was so vivid and so real, too real. Now that we're home, it feels like a dream that you wake up from and you know it was very vivid but the details are blurry. I know I sat in a waiting room for 20 minutes not knowing if he was going to live or die after he became unresponsive and that was my absolute lowest point. I know at some point, I sat in the basement of the hospital and held his old lungs in my hands. His old, hard, rubbery, rough lungs. Those lungs I fought so damn hard to keep healthy. That was such a bittersweet moment. I felt relieved that they were out of his body, I felt sad that they needed to come out, I felt angry that they were trying to kill him and I felt like I had failed him in some way because maybe I didn't do enough. I didn't know for sure whether we had made the right decision until I sat in that lab and had the pathologist tell me that "with lungs that sick and scarred, I would be surprised if he had made it past Christmas." That's when my heart shattered. I knew my little boy was sick and I knew he had less than a year but I didn't know it was so much. I didn't know his time was SO close to running out. I didn't know how close we really were to losing him. So while I think the roller coaster ride through the dark is a good analogy, I would describe it more as a train ride. A train ride that has a dark, long tunnel. When you first board the train, it's exhilarating as the view speeds by and you can tell if the train would slow down, the scenery would be beautiful. Then the train slows down to go through a tunnel. A long, dark tunnel. You don't know how long it is or where it's taking you. After some time, you get used to the view and darkness in the tunnel. Then when the train comes out of that tunnel, the brightness stuns you and since the train has slowed, you can see the scenery and it's breathtaking. Seeing my little boy not have to struggle for every breath, cough until he's blue or vomits, relying on oxygen and bipap, sitting on the couch and watching life pass him by is my new scenery and it is breathtaking. And since I've been so busy fighting for his every breath with every one of mine, I had forgotten how important it is to just slow down, take in the view and enjoy the ride.