“I Think Aidan is Dying”

The Transplant

It was 17 years ago today, September 30th 1999, that our son, Aidan, had his liver transplant surgery. He was 2 days short of being 4 months old. We heard earlier in the day that a donor liver had become available and the surgery was scheduled to start in the evening. We brought all our other children in with us to visit with him. Just before they were going to take him off for the transplant his heart stopped. My wife said, “I think Aidan is dying.” I will never forget that moment. Hits you right in the heart – hard.

While the medical team worked on getting his heart going, a nurse shuttled us into an office right next to the NICU on the 15th floor of UCSF. The nurse took us to small visitor room first. “Can you please leave?” she asked the 3 people in there. “Why?” the guy asked. “We have a family in crisis.” They didn’t leave so the nurse took us across the hallway to a doctors office. We followed numbly and sat on the floor. My wife was inconsolable. We were scared the surgery would be canceled. We had walked with Aidan through 4 months of very tough times (this wasn’t the first time his heart had stopped) and it looked like all our hopes were going to disappear.

The surgery wasn’t canceled and he was wheeled past us soon afterwards on his was to transplant surgery and we were able to say goodbye and that we loved him. They set up an impromptu  place for my wife and kids to sleep and I went to the visitor room on the 6th floor near the NICU to wait for reports from the surgeon. Aidan was taken off for the transplant around 7 pm and the surgery lasted until 6 the next morning. The transplant surgeon, Dr. John Roberts, would come in a give me updates as the surgery progressed. And then I would walk over to where my wife was with the kids and give her an update.

Post Transplant

Aidan was very sick immediately post-transplant. We heard that his evening nurse came to see him and started crying. He was in bad shape. It was obvious the next evening that something was very wrong. His blood pressure was dropping and they were pumping blood into him. I stood there with my wife for hours, my arm around her shoulder, just watching – rooted to the spot – helpless. I remember seeing the blood pressure number drop down to around 30. The nurse was pumping blood into him by hand from a very large syringe into the tubes. I remember her rubbing her arm because it was getting sore.

At one point a large amount clear fluid suddenly poured out of Aidan’s mouth and nose. My wife and I gasped. They said, “No no, its okay, he’s still here.” A little after midnight the whole liver team was there and Dr. Roberts took him back into surgery. The anesthesiologist was also there. He must have been in his mid-60s and was legendary for how good he was. I remember him as a very gruff older guy. When they wheeled Aidan off for another surgery to figure out what was wrong, I saw him gently pat Aidan on the head and whisper, “Don’t worry sweetheart we’ll take good care of you.”

In this follow up surgery they found bleeding and fixed it. He ended up needing two more surgeries in the next couple of day to solve his immediate post-transplant problems. So we were there standing next to him in PICU around midnight the next night as they took him off for emergency surgery again. He needed a 3rd follow up surgery the next night It was three late night surgeries in a row.

 

At this point we settled in for the wait to see if rejection would occur and hopefully move on to a normal post-transplant life. At first his color returned to normal and things were going well. But he ended up having a long string of various medical problems – some minor – some major – all scary. I’m not going to list out everything, but it was another five years of bad stuff happening. A month and a half after the transplant he had an “event” in November that affected the left side of his body and also his cognitive abilities. It was five years before he finally got past having periods of long hospital stays.

Other Stories and Kids

When you are living in the hospital for large parts of five years you see many things. When Aidan was having his brain surgery I spent a month with him in the PICU. There was a 11 year old boy from Africa there at the same time. He moved in the PICU bay next to us – all the walls are glass. He was not too bad and then something happened and suddenly he was in very bad shape. When he was off to surgery, his nurse started hanging up equipment in his room like he was preparing for war. Over the next couple of hours all the other nurses stopped by and told him to let them know if he needed any help. There was a real sense of camaraderie. I don’t know what happened to that boy. I never asked.

Pre-transplant I was in the snack room that the nurses let us use on the 15th floor of UCSF. There was another Dad in there whose child was in the NICU too. One of the long term stays like us. He talked a lot and I just listened. He had to unburden himself from all the stress he was feeling. He talked about future plans for his child. Sometimes people just need to you to sympathetically listen to them. We asked later and found out his child had eventually died.

When Aidan was more healthy he would stay in a regular room in the hospital instead of the PICU. I was staying in his room with him about 10 months post-transplant when he was in the hospital for some bile duct surgery. Our room was right next to the nurses station and there was a 15-year old girl who would hang out there talking to the nurses. She would lend Aidan her tape recorder. We had recorded our kids talking to Aidan or reading him stories and we would play the tapes for him. When Aidan and I were back for another stay a few months later I was talking to one of the managers of that floor, a friend, who looked and sounded just like Morgan Freeman. I asked about the girl and found out that she hadn’t made it. This made me reluctant to ask about other kids in the future. It hurt.

Soon after we first showed up at UCSF there was a family we met. This when things had calmed down just a little for Aidan. By calmed down I mean he was day-by-day instead of minute-by-minute. When we first got there Aidan was minute-by-minute for the first few days. He could have gone at any moment. We didn’t leave the 6th floor. Anyway the boy in the other family needed a bone marrow transplant and eventually got it. It must have been a year or two later and we were at UCSF with Aidan across the street from the main hospital for a clinic visit. And sitting there was this 14 year old boy. We heard his first bone marrow transplant failed. He was just sitting with eyes not focused on anything and looking way too old for his age. I really really hope he made it.

When Aidan was about 2 years old I was pushing him around in the stroller and was going past the PICU. There was a lady there whose young nephew had just been admitted to the PICU with acute liver failure. I think he had ingested the wrong thing. I told her Aidan’s story and how far he had come. She got down on her knees and looked at Aidan with tears streaming down her face. Writing this brings back the emotions that I felt at the time. As I looked at her gently talking to Aidan, I realized that he was a living symbol of hope.

I think it was around 3 years post-transplant when we met the family from Afghanistan. They had had a very eventful life. Their baby needed a liver transplant and the transplant happened while I was there at the hospital with Aidan. I talked to them quite a bit both pre and post transplant. Their baby had post-transplant problems like Aidan. I talked with them about our path – hope. Later on the transplant coordinator told me, “they really really like you.” That made me feel good that I was able to slightly ease their burden.

Gratitude

A week before Aidan had his transplant we were just in a holding pattern waiting for a donor liver to become available. I was stopped at the light on 19th and Sloat avenue in San Francisco driving back to our apartment next to San Francisco State and I started thinking about the donor-to-be. That kid was most likely somewhere playing right at that moment. It was a sad feeling. A week later Aidan received his liver from a 7 year old Hispanic boy from the Central Valley of California who was hit by a car. His parents gave us a gift beyond measure. They are often in my prayers.

I’ve kind of rambled on here. This anniversary day always brings up a strange mix of emotions. I’m acutely aware that I could be visiting Aidan at a graveyard. But I’m not. He is up in Eugene, Oregon with me today. He is my buddy. Cognitively he will always be around 6 years old. I took this photo of him this afternoon taking a nap next to me. Life is good.