“I Think Aidan is Dying”

By Kevin Ryan

Posted on September 30th, 2016

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.

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“That’s really mean. Quit it.”

By Kevin Ryan

Posted on September 8th, 2016

Books

I read an eclectic mix of books ranging from technical ones covering math and physics to autobiographies like Dmitri Shostakovic’s and even occasionally kid’s books like Rex Lee Trailing Air Bandits. That last one had my uncle, Levern Lord’s, signature inside the front cover along with the date 1935. He was nine years old in 1935. My grandma took a photo of him dressed up just like Rex Lee at their cabin at Huntington Lake. My Moms now owns the cabin and the photo is hanging up on the wall there.

Levern was killed in action at Manila in the battle for Nichols Field during World War II. So when I saw his signature that made it a special book for me. A few years ago my Mom showed me the letter that his best army buddy wrote to my Grandma after he was killed. He wrote that Levern had refused to be medically evacuated until every one else who was injured had been and how they were shocked when he didn’t make it. Growing up I pictured him as an old guy like my other uncles who survived the war. He was 19 years old. Now, having had kids of my own that were that age, I realize he was very young. Too young.

 

Memories

Most recently I finished reading a couple of books: Uncle Tom’s Cabin and then after that, The Sociopath Next Door. Here is an excerpt from The Sociopath Next Door:

My daughter’s fifth-grade class had a field trip, and I was one of the chaperones. We went to see a play called Freedom Train, about Harriet Tubman and the Underground Railroad. On the noisy bus ride back to school, one of the boys was picking on another boy, poking him and pulling his hair. The quiet boy being poked was developmentally delayed, friendless, I am told, and did not have a clue how to defend himself. Even before one of the adults could intervene, a petite girl seated just behind the two boys tapped the tormentor on the shoulder and said, “That’s really mean. Quit it.”

This brought up some old memories of my own. Back when I was around 7 there was a man that came in sometimes to run PE for our class. All us little kids would line up outside before going out to play kickball or something else. He went down the line having each of us say our name. “Stan” was a couple of guys in front of me in line. I’m pretty sure he was developmentally delayed. “My name is Stan Smith” (Note that “Stan Smith” is not my classmate’s real name). He had problems enunciating words correctly. The man made fun of the way he talked and made him say his name a few more times. Okay, wow, here I am tearing up just a little as I write this.

I can close my eyes and see the exact spot where he and I were standing when that happened. It is one of those moments that we all have in our life, good and bad, that are permanently inscribed on our souls. *** Phone call summer 1985 “Grandpa died” Dynamix office at foot of Skinner’s Butte Eugene. *** My son, Aidan, being born 1999 Clovis Community Hospital doctor not in room “oh no” deliver myself as doctor shows up and says “Your’re doing fine.” *** Twin Towers coming down 9/11 television home office Shaver Lake – what am I seeing as tower falls!? *** I’m sure everyone can close their eyes and list off their own moments. Some moments we all share and some are our own personal family ones.

I don’t know what path through life Stan has taken, but I hope it has been a happy one for him. Whenever I meet someone like Stan I know that, whatever path we taken to that point where our paths have intersected, his path has been harder than mine.

 

Twitter

Lately I’ve been spending some more time on Twitter, both trying to post a little bit about what I’m working on and also general life stuff. I’ve also been checking out some of the different content that is there. It seems to me that it is like a very large information mountain interlaced with an amazing mixture of different stuff from all over the world. It’s the internet so there are trolls and silliness, but here and there with a little digging you can find real veins of gold.

Around the same time that I finished up reading those last two books, I was wandering around on twitter and came upon Andrew Selsky’s twitter feed. He had posted a photo of Stephen Stills from his Manassas days back in 1973 taken by his brother. He and his brother had great seats and got some nice photos. Oh, cool, I would have loved to see Manassas (that was a magic band and album), but they were just a little bit before my time. I finally got to see Crosby, Stills, and Nash at the LA Forum in 1977 when I was 16 ( I can drive!) and a couple of years later Stills with his band in June of 1979 at Fresno State. I took my little brother and we got in line early (it was general admission) and we were right on stage rail. Could’ve reached out and touched Stephen through most of the concert.

 

 

I started scrolling back through his tweets and scattered throughout are photos of hikes in wonderful places, some craft beers, more photos and videos of different musical groups (I discovered Johnny Clegg and got to see him when he played in Eugene soon after!). And there was even an old super 8 movie from his college days. I filmed some super 8 movies in the 1970s with my friends and little brother as actors/extras. I need to get them transferred to digital if only to see my then 7 year old brother in a dress playing a lady in “The Muggers.” Anyway, what I’m seeing in the tweets is lots of overlapping interests. It brought back to me the sense I’ve had for a ling while that the world is full of buddies that I’ve never met and may never meet.

Andrew also posted many tweets related to his job as a foreign editor/correspondent for the Associate Press (AP). There was a link to a story about marijuana – can’t remember any of the details on that one (that’s a joke – read the story). He has been and lived many places around the world throughout his career; so there are photos, videos, and stories about Haiti, Columbia, Afghanistan, and many other places.

And in some of these places if you are trying to make things better for your country and you say the equivalent of “That’s really mean. Quit it.” then those in power may kill you. Sobering thought. And the ones that say “Quit it.” know this and they say it anyway. Very courageous. Andrew’s job tells their stories to us. It is an important job. It can be a dangerous job. And the bad guys really don’t like these stories being told so sometimes they’ll kill the story tellers too.

Video by: Zoe Selsky

A short aside. Andrew is a novelist and has recently published a new novel called Cowboy Jihad which draws on his oversea’s experiences. I’ve just finished reading it and it is really good. Just a week ago I read a story in the New York Times about a Afghanistan veteran who reminded me in some ways of Stu who is a character in Andrew’s novel. Cowboy Jihad is the story of terrorists planning an attack on Facebook’s data in the cowboy town of Prineville, Oregon. It is also a story about the choices that people make, good and bad; and also about redemption. You can get it on Amazon.

 

More Serious Games

I originally had the bold above say “Mature Games,” but mature conjures up an image of things that are anything but mature; so I used “Serious” instead. And serious reminds me of something that G.K. Chesterton wrote a little over 100 years ago:

Mr. McCabe thinks that I am not serious but only funny, because Mr. McCabe thinks that funny is the opposite of serious. Funny is the opposite of not funny, and of nothing else. … Whether a man chooses to tell the truth in long sentences or short jokes is a problem analogous to whether he chooses to tell the truth in French or German. … The question of whether Swift was funny in his irony is quite another sort of question to the question of whether Swift was serious in his pessimism. Surely even Mr. McCabe would not maintain that the more funny “Gulliver” is in its method the less it can be sincere in its object. The truth is, as I have said, that in this sense the two qualities of fun and seriousness have nothing whatever to do with each other, they are no more comparable than black and triangular. Mr. Bernard Shaw is funny and sincere. Mr. George Robey is funny and not sincere. Mr. McCabe is sincere and not funny. The average Cabinet Minister is not sincere and not funny.

Games can entertaining, they can have humor, they can make you laugh; and that doesn’t take away from them also being serious.

So reading these stories from Andrew’s tweets/links and especially about his job started to get ideas of possible game projects percolating in my mind. Ideas and scenarios would pop up and drift through my mind as I took my morning walk through the forest. My job is creating interactive entertainment (computer games – but “interactive entertainment” sounds so much cooler, so humor me). I suppose the way that inspiration just magically appears is true in any sort of creative field like literature, music, movies, etc. in that it can strike you at any time from any place.

If you’ve been working in your field for a long enough time it seems like it becomes second nature. You can’t turn it off. There is something magical about the whole process. You snatch these ethereal phantoms out of the air, and soon there are words on a piece of paper telling a story, or new music, or in my case neat interactive things happening on a computer screen. It really feels like magic. You just sit down and apply yourself to your craft and you create something out of nothing.

Now unlike literature, music, or movies, interactive entertainment is a very young field that is just starting to mature. It is maturing in the sense of what types of games are now being created. I’ve been in this industry from the very start,  basically from our “silent film” era and it has evolved to the point where now it is a creative medium that has moved way beyond Donkey Kong and Centipede. Not that those games weren’t fun. I spent many quarters in the basement of the Erb Memorial Union at the University of Oregon in the early 1980s playing different video games there.

Okay, one more short aside. Sorry. This time about the Erb Memorial Union. When I was a student you could write checks there for cash. So one time when I was home during school break I had my bank statement and some canceled checks and my Dad saw my checks made out to “EMU”. So he asks, “What’s this emu?” I was tempted to tell him that it is the great bird god that we worship at the University. Oh, and one other thing, you can see the EMU and a whole bunch of the University of Oregon in the movie Animal House.

Alright, back to interactive entertainment and how it starting to come into its own as a true artistic field. That Dragon Cancer is an example of how games are changing. Ryan Green wrote the game while his very young son was battling cancer. It is a game that tells of his family’s journey. It is a very tough journey. I bought it the day it came out to support the author, but I don’t know if I’ll ever be able to play it.

Another game that I have been playing recently is 1979 Revolution: Black Friday. You play a photojournalist caught up in the Iranian revolution. I’ve been playing a chapter or two every so often when I have free time. I’m currently partway through it. It is harrowing. It should be because it was a harrowing time in a dangerous place.

Moving Hearts

When I was younger computers were much less powerful than they are today. Huge orders of magnitude slower. So it was a big deal and you were a hotshot top-gun if you could get a bunch of things moving around on the screen at a high frame rate. I did that – wrote fast code at the lowest machine code level (6502 hex code – no assembler) that I knew was good. It felt good and was fun. I know I can move pixels fast. But, nowadays moving people’s hearts seems a much more rewarding and challenging task.

“Be the #hero of your own life. Pursue your dreams relentlessly. Help others achieve theirs.”

It is interesting how several different events in your life can collide at roughly the same time, one of them being that simple twitter post, and that can move you to move in a different direction in your own life. Serendipity – “fortunate happenstance” “desirable discoveries by accident.” I guess that is what happened. It is an amazing place that this world is turning into. Where a message can fly from South Africa to the Sierra Nevada Mountains of California, from fall to spring, instantly and nudge the trajectory of your own life. And then hopefully it can lead to you to help others to achieve their own dreams and nudge their lives in a positive direction.

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