It’s hard to know where to start to make this a coherent narrative because if I included all of the twists and turns that I took (internally and externally) from May 7th-17th it would be a long time before I could stop, and we’d all be left with more questions than answers. At least, that’s how I feel today. In truth, every day brings more answers, moving me slowly towards whatever passes for my new normal life.
One of my surgeons told Krista and my sister that it was unlikely that I would remember anything other than being at a t-ball game. Unfortunately for you and me, that wasn’t the case at all.
May 7th was supposed to be memorable because it was my first day training my replacement at OUS. It being her first day, we didn’t get too much done, but I assured her that, “Tomorrow we’ll get a great start and really get into the guts of this job.” Ha, ha – she had no idea the lengths to which I would go to avoid weeks of training.
May 7th was also Krista’s last day out of town at the OSU College of Business awards ceremony. It was her first ‘big’ trip in her new job, and the kids and I were excited to hear how things went.
May 7th was supposed to be – and was – Mia’s guitar lesson. After which, we headed to Subway, grabbed a sandwich and the kids and I went over to Alex’s t-ball field for a game against the Orioles. During the game I was coaching the pre-school first baseman on the finer points of his position –
“Ok, Emmet, what do you do when the ball gets hit? . . . That’s right, run to first base and point your glove at – ” And then there was a popping sensation in my gut followed by excruciating, unrelenting pain.
May 7th was not supposed to include any type of stabbing pain. Now on the sidelines, nothing that I could do would make the pain go away or even abate to any meaningful degree. I remember thinking that – despite the pain – this had to be something simple and stupid. Gas pains? I didn’t have any idea what was causing it, but to turn on so abruptly, without any precursors or precipitating event, it couldn’t be anything serious. Still, I’ve hurt myself a lot in my life, and this was beyond any of those bumps, bruises or contusions
Which brings me to the first silver lining of my adventure, the grandmother extraordinaire of Alex’s teammate Quincy. Did I mention that she is also a nurse? Because, despite her other qualities, that’s the reason I decided to take a little walk over and sit next to her. The best compliment that I could give at this point is that, minutes later, I was getting into my car (my sister at the wheel) to head up to the hospital. I remember thinking that it was a good thing we didn’t bike to this game because it would have been a much longer ride by bike (ha, ha).
At this point, I still thought that – painful as it might be – it couldn’t be ‘a big deal’. Alex was still playing in the game, and in those few minutes I couldn’t even see where Mia was (playing with one of her friends as it turns out). Some of our friends on the team were going to look after them, and anyway, wasn’t I probably going to be back soon anyway? Why worry them unnecessarily? I’m glad that I’m telling the version of the story that ends with many more hugs and kisses and chances to show them that I love them rather than the version where I just disappeared in the middle of the game. The same with Krista – at this point still in Portland at the awards banquet. It seemed like a big – painful – ado about nothing.
We pulled into the wrong bay at the hospital, but I assured my sister that I could walk in while she parked. No lines (hooray for a slow day in the small town of Corvallis), and before I knew it I was scrambling for my insurance card in my wallet. Krista left me a copy of her new card on the banister rail at home. I could picture where I left it that morning because I would just grab it later. I pulled every single card out of my wallet before I finally found my insurance card.
The doctor at the ER asked quick – apparently revealing questions – and shuttled me right into a CT scan. The pain was, if anything, growing and getting harder and harder to think straight through. I finally knew that something was wrong when the doctor came back and said that the CT scan revealed an aortic dissection from my heart down to my hip. Yeah, I didn’t know what it was either: http://en.wikipedia.org/wiki/Aortic_dissection. I knew that it was serious when he deferred all of my follow-up questions to the cardio-thoracic surgeon who was, “coming in right away”.
The kids were at the t-ball field. Krista was up in Portland. My sister was at my side, and my dad was on the way. I asked the nurse for a pen and a paper because what else do you do at that point? Mia is 7, Alex is 6. I tell them I love them every day, but think of all of those other things that have gone unsaid so far. What about everything else? Things that I was saving until they were older. Things that I just hadn’t gotten around to yet. Heck, Krista and I are celebrating our 10-year wedding anniversary this year; not nearly long enough.
So I wrote. At the end of my first page the surgeon arrived. This was too big for them to handle in Corvallis. They were going to get me on a life flight helicopter up to Portland. What was the prognosis for this operation? How long was recovery? What else should I know? She deferred those questions to the surgeons up in Portland.
I called Krista at this point. She’d gotten the high points from my sister, and there’s not much to say about that call. I wanted to say everything, and couldn’t say nearly enough. She would meet me at OHSU.
So I wrote some more. Another page of the same. What else could I do? I had to assume that the very earnest doctor and other ER folks were doing their jobs well (they sure were), and my best bet was to stay as calm as possible and write. It didn’t feel like a death sentence, but it didn’t not feel like one either.
They gave me morphine for the pain, and the pain chuckled and kept right on going. I got bumped from their first choice of locations at OHSU. Historical note – this was the second time I was bumped from a helicopter trip. The first was at MassMutual when we were going to take the helicopter in to NYC. Bad timing for me on that one as well. At MassMutual our #2 option was taking the train. Fortunately for me, the ER doctor found another available surgeon at Legacy Emanuel in Portland. The Life Flight folks would take me up right away.
One of my nurses in the ER was the father of one of Mia’s soccer teammates. I’m sorry to say that I didn’t even notice until I was being wheeled out, but looking back it was amazing how many friends and acquaintances were looking out for me every step of the way. It was like a bucket brigade except that’s a terrible analogy because that would mean that I was passed friend-to-friend along the line until they threw me into the fire. Hmm… I’ll have to work on that one.
Trundling along in a gurney out to the helicopter. If you’re over 5’10” you don’t fit in one of these helicopters. I was folded up accordion style and was wedged into the passenger bay. My feet – legs doubled up – were pressed against the forward bulkhead. I asked if it was ok for my feet to be pressed against it, and was told, “Yeah, that’s no problem. Just don’t push on it.” That gave me something else to focus on not doing. Pain started spreading into my back at that point. Under normal circumstances I would have said that it was due to how I was contorted, on my side, on a stretcher for half an hour. I was reassured by someone letting me know that it was possibly the dissection getting worse.
The Life Flight company Reach sent us a survey about their performance. On it, they asked if I would recommend them to my friends. I guess that would have to be an enthusiastic, ‘yes’. If you’re ever in need of emergency transport from Corvallis to Portland, don’t book on Southwest, fly with Reach. Sure, it’s a little more expensive (about $45,000 before insurance, and worth every penny), but they gave me in-flight morphine and even called Krista on departure and arrival. When we were leaving they told my dad that they would be up to the hospital in 24 minutes. He said, “So about a half an hour?” They said, “no. 24 minutes”. Service!
In all honesty – I wasn’t in the best state of mind to judge such things, but they fly low, they fly fast and the trip was remarkably smooth (again, morphine didn’t seem to touch the pain, but it couldn’t have hurt the ride).
The helicopter arrived at Legacy Emanuel and – after jimmying me out – I was rolling through the hospital doors and …. into a construction zone? On unfinished drywall in front of me was a sign made out of blue painter’s tape, ‘OR ->’. Super! I guess we’re headed in the right direction. Down a long under-construction hallway. Past some guys in scrubs hanging out in a doorway (no door in sight), but the sign there said X-Ray. Then through the doors to the operating room. It was 100% due to my trip through the construction zone, but the OR was shiny and bright and looked like it was set up in a garage. That’s not a fair statement at all – nor is it true, but my impressions of the room were what they were. And those impressions didn’t extend to the folks standing, scrubbed, under those bright lights. What I knew with complete certainty was that my life was completely in their hands. Fortunately, as with so many other people at every step of this story, that faith was entirely deserved and subsequently rewarded.
Other minor things happened (although it’s hard to believe that I’ve left any details out of this story), but they got right to work and the curtain dropped on the pre-operation half of my story.
The story could have ended there. Or at least taken a different, much sadder, turn – told by a different author. Facts are facts. For me it was just like a light switch turning off in my head.
The surgery was 6+ hours, my unconscious recovery for a while longer. I know that so many people came together around my family during that time, bridging many gaps in many ways. I feel like I’m selling those efforts short with such a fleeting mention, but I couldn’t possibly do them justice and I don’t know half of what everyone went through. In a very real sense, I wasn’t there to experience those good deeds. I had the easy part; I just slept.
Until I woke up again. I couldn’t breathe. I was choking on something. I don’t remember much pain, although I’m sure it was there. I do remember not being able to breathe. I thought it had something to do with the tube stuck down my throat, and tried to fix that problem. That’s how my arms got tied down. Eventually (may have been the next minute, might have been the next day) Krista told me that the tube wasn’t stopping me from breathing, it was helping me to breathe. And in a moment of clarity I remember thinking, “Oh, yeah, that makes sense.”
When I was lucid I remember clawing my way back to steady consciousness only to have it slip away. I kept forgetting that I could open my eyes. I had fitful dreams.
Then I started to recover.
I was awake for longer periods of time. Aside from Krista and my parents who were a constant presence at my side, I remember a stream of friends and family – Rebecca, Alex, Mia, Ginny, Kim, my in-laws (who made the trip from MA on a moment’s notice to watch over the kids). So many more people sending care to me and my family.
From there it got easier, but for me this whole period is pretty hazy. I counted time by the number of tubes that were removed from various locations on my body. I was transported out of the cardiac ICU onto a regular ward. But only for a day or two.
Then things turned south again.
I’m an unreliable narrator at this point. The more compelling story during that time – and really from the moment I went under the knife the first time – will be told by Krista in part 2.
The story above is mostly details, details, details. The tapestry on which all of these details were stitched is rich with loving family, terrific friends, compassionate medical professionals and a caring community of which I am fortunate to be a small part. Many things have changed in my life since the events chronicled above, but all of the vital constants in my life have remained. I appreciate every moment of bonus time that I now have to share with you all, and look forward to many more memories to come.
Mayday: The Aortic Dissection Story, Part 2
It’s astounding how quickly – in the matter of minutes – life can change. Life as we know it, life as we’ve built it. And life that doesn’t always go as we’ve planned it. One minute, I’m sitting in a banquet hall at the Downtown Marriott in Portland, satisfied that our event has gone off without a hitch; the next minute I’m being paged over the loudspeaker, ushered out of the room, and told in that grave tone you never, ever want to hear, “There’s a phone call you need to take.”
One minute I’m talking to Nathan on the phone, trying to tell him everything I ever wanted to tell him, but rushing to get off so he doesn’t hear me burst into tears; the next minute I’m sitting in the ICU waiting room listening to Dr. Hill say sternly, “This is extremely serious. If I don’t go operate on him right now, he is going to die. And even if I do operate on him right now, he could still die.”
The six plus hours we sat in the waiting room while he was in surgery were easily the worst six hours of my life. I sat staring at the door, waiting for something to happen, breaking down every time a “code blue” was called (we’d later learn that they’ll never call a code blue for someone in surgery, but didn’t know that at the time). I was physically ill – sick to my stomach, as I spent six hours trying to figure out how the hell I would to tell the kids that their dad was gone; and how the hell I could be strong and carry on so I didn’t screw them up for the rest of their lives. And I spent six hours refusing to read the good-bye letter he had written and given to Rebecca to give to me.
I learned over the 10 days Nathan was in the hospital that the single best feeling in the world is relief, followed closely by hope. When Ben, one of our favorite ICU nurses came in around 5 a.m. to say that they were stitching him up, there was that glorious feeling of relief – he made it. When he said his vitals looked stable, there was that glorious feeling of hope – this could work out. We were by no means out of the woods yet, but that little bit of relief and hope were enough to push me through until the next big questions – did he have a stroke? and is he paralyzed? – were answered.
Dr. Hill came out and talked with us, and seemed pleased with how the surgery went. I remember noticing how much his demeanor had changed. He was hopeful that Nathan would be able to exercise again, although he would no longer be able to play basketball. He told us how Nathan was put on the heart and lung machine, and his body was cooled (to 82°F) while they performed the Bentall procedure. He informed us that part of his aorta was replaced with a Dacron sleeve, and he now has an aortic valve that we’d be able to hear tick. He mentioned Marfan Syndrome as a likely cause, and although that has since been cleared of being the culprit, we took a bit of comfort in knowing a possible answer to the question “why.”
I was surprised at how quickly we got to see Nathan after surgery. His mind came out of the anesthesia quicker than his body, and he did not like the breathing tubes in his mouth, but he was not yet breathing on his own. I remember telling him not to try to pull the tubes out, and getting a huge eye roll – and right then, I knew his mind was A-OK. We had to get him breathing on his own before they could take the tubes out. We learned so much (more than we ever wanted to know) about all the machines and equipment. When the output was grey on the screen, he was breathing on his own. I would tell him to breath, and I could tell on the screen he was listening to me and breathing on his own. At one point I said “hey, he’s listening to me!” and with his eyes closed he held up his thumb and his pointer finger as if to say “just a little bit.” And that small gesture was huge – it meant that the Nathan I know and love, was right there with me.
The next day and a half was a flurry of activity in the ICU. Dr. Hill was happy Nathan didn’t need any blood transfusions, and everything seemed to be going great. The first 12 hours in the ICU after surgery were busy, and our nurse, Nelia, was on her toes the entire time. Nathan still had the breathing tube in his mouth when she was signing off of her shift, but he made a point to sign “thank-you” to her to show his appreciation.
Slowly machines and tubes were removed from his body, and he was moved from the ICU to the cardiac floor on day 3.
We (I always had some combination of Gary, Susan and/or Rebecca with me) obsessed over every blip, beep, bell, test and measurement they took. Nathan got up to go for a walk. He went to the bathroom on his own. He was pretty coherent, and pain was manageable. It seemed to be going well until the evening of the fourth night.
Nathan was in excruciating pain. He couldn’t stay in one position, he couldn’t get any rest, and he wasn’t super coherent. He would try to sit up to get comfortable, and his oxygen levels would tank. I was running out to the nurses station every fifteen minutes – this couldn’t be right, could it? How could the pain be getting worse, and not better?
At one point, I was told to keep encouraging him to take deep breaths, so I did what I was told: “NATHAN, YOU HAVE TO BREATHE!” I yelled – this was serious business. He hadn’t said anything in hours, but he mustered up the energy to whisper back, “Krista. I didn’t lose my hearing.” Even through all this, Nathan was the one keeping it real and making me laugh.
The next day, his blood pressure continued to drop, as did his oxygen level. They tried everything to to help, including tipping him upside down in the bed. The nurses finally called the doctor in and they decided to re-admit him to the ICU. We were on high alert again, and all the anxiety and fear started rushing back. I remember crying to the doctors and nurses, and asking them if I needed to have my kids come see him right now (they were scheduled to come see him the following day). I knew this was a horrible question to ask and a terrible position to put them in, but I needed to know: did they think he was going to die? Something was definitely going wrong, and they weren’t quite sure what yet, but they kept me calm. They always had a plan, and as a planner, that made me feel better. In retrospect, I’m thankful I stayed away from Googling all this stuff until after I got home, because I probably would have had my own heart issues if I had done so.
At this point in the story, I need to give a huge shout-out to all the amazing doctors and nurses that helped us. We were told by numerous people that Dr. Hill was one of the best doctors in the country at performing this particular surgery (the phrase “world famous” was used). Dr. Hill also kept telling us that he had a scheduled day off, yet we kept seeing him – either in scrubs coming out of surgery, or making rounds checking on patients. He finally decided to take a well-deserved day off, and Dr. Dubose filled in for him. When Dr. Dubose came in to take a look at Nathan, he presented me with this little sandwich baggie with flower petals in it:
He said he was with his 4-year old daughter when the call came about Nathan, and he explained to her that he had to go help a daddy and his family, so his daughter picked those flowers to give to us to make us feel better. So when I say we had amazing service, these are the kind of things I’m talking about.
Dr. Dubose suspected that Nathan may have some excess fluid, and explained that they could do a simple procedure to relieve the fluid if that was the case. They took him for a CT scan to confirm.
Turns out it was worse than anticipated – Nathan was experiencing cardiac tamponade;
basically he was bleeding internally into the sac that surrounds his heart, and he needed to be rushed back in for another emergency open heart surgery to repair it. I had only a minute to talk to Nathan, and was at a loss for words. I was trying to have a “moment” with him, in case it was the last, but what do you say? I started with, “Nathan, you are strong -” and before I could get any further, he interrupted in song and continued “no one can tell us we’re wrong….searching our hearts for so lo-ong.” So on that note – singing Love is a Battlefield – he was swept off, leaving me half in tears and half cracking up.
This surgery went pretty quickly. We were waiting in the family lounge off the wing of the Dr. Jonathan Hill “Hall of Hope” – Dr. Hill even has his own hall named after him for all the contributions he’s made to the hospital and treating cardiothoracic traumas.
Photo in the “Dr. Hill Hall of Hope”
I was sick to my stomach (again), so at one point I got up to go to the bathroom,and I heard someone whistling walking down the hall….I turned and saw it was Dan, another one our favorite nurses, coming to look for us. I thought to myself that he couldn’t possibly be coming to deliver bad news if he was whistling, but still braced myself for the worst. He said everything looked stable and they were sewing him up – relief. Shortly after around 8 p.m. on May 11, Dr. Dubose came out with a great OR report – everything went really well – and I don’t know if it was sheer exhaustion or what, but the feeling of relief was so great I almost felt intoxicated I was so happy. He explained that it’s very rare for someone to have cardiac tamponade 4 days post-surgery (if it’s going to happen, it usually happens within the first 48 hours following surgery), but it was all fixed. Yay!
When we went back to Nathan’s room in the ICU there was the flurry of post-op activity, but it was different, and the euphoric feeling faded pretty quickly. His chest tubes were bleeding – a lot – and there was someone there specifically “milking” the blood through the tubes to keep them clear. This went on for hours through the night, and things didn’t feel right. They gave him blood transfusion after blood transfusion (or FFP for “fresh frozen plasma” as those of us in the know call it). It was not going well. We peppered the nurses with questions, and I remember hearing Dan say “get Dubose on the phone, I need some answers.” The directive was clear – his bleeding needed to slow down significantly by 5 a.m., or they were going to have to take him back in.
We watched helplessly as he continued to bleed, all night. Finally at 4:30 a.m., Dr. Dubose came back and told us that he couldn’t wait any longer, and they needed to take him back into the OR. He wasn’t sure what was going on, but the only thing to do was to open him up and find out. Dr. Dubose asked how I was holding up, and I was a wreck. I could see that he felt horrible – he had just left us telling us everything was going great, and there we were again, less than 12 hours later, having to say goodbye before they cut open his chest and break open his sternum (although there probably wasn’t much breaking involved by this, the third time).
Nathan still had the breathing tube in his mouth, a central line in his neck and was pretty heavily sedated, so he wasn’t able to speak, but as I said goodbye and told him I loved him, he held up his fingers in the shape of a “W” and with that I knew exactly what he was saying: All I do is win. It was his way of telling me everything was going to be OK. So again, in the middle of a life-threatening issue and he’s trying to make ME feel better. Pretty amazing.
The third surgery took a bit longer than the second. When it was over, Dr. Dubose came out again, and worried he’d lost some credibility with us, tried to convince us that it truly went well. He said there were a few clots he cleaned up, but other than that, everything looked good. He left Nathan open for some time just watching his heart beat, and made every doctor and nurse in the room come over and look at it to ensure he didn’t miss anything. He told them, “I have to go back out and face that family again, and I need to make sure everything is OK here.” Relief was a little harder to feel after the roller coaster we’d been on, but that news was the single best Mother’s Day gift I could ever get.
Nathan seemed to bounce back after that surgery. Maybe I’m exaggerating a little, but that’s what it felt like. It was literally night and day – he came around pretty quickly, all his vitals looked good, his bleeding was normal.
Chest tubes with “normal” blood flow.
Thank goodness, as this was the day the kids were coming up to see him. Originally we planned on them coming that day because we thought Nathan would be close to going home, and we hoped he’d be feeling well enough to walk around and talk with them. We didn’t anticipate surgeries #2 and #3.
When Mia and Alex got there, he had been out of surgery for a few hours, and while he was doing “great,” he still had machines hooked up all over him. I had to prep the kids with what they were about to see. I explained to them that daddy just had another surgery, and he had a tube down his throat so he can’t talk very well or very loud, he has a lot of machines hooked up to him, and he’s still very sleepy.
Even with the preparation, it was still scary to see the person who is the rock of our family like he was – I could see the tears in Mia’s eyes. Alex thought it was pretty cool that Nathan had a “glowing finger.” Apparently he had been bragging that his dad is now a cyborg (due to his mechanical heart valve).
Nathan was able to say hi – but just barely. If you talked to him, he’d open his eyes and try to respond, but not long before he fell back asleep. It was good to see them – Nathan and I have never both been away from them for more than a night. So to suddenly be have both of us gone for a week was hard. It was also hard for them to imagine what was going on, so it was good for them to see him with their own eyes. The good news is that I got to see my mom and my kids on Mother’s Day – not under the circumstances I would have liked, but we are all about the silver linings.
In the ICU “suite”
The next day things were going good and Nathan wanted to try to stand up. He got up successfully, but as he was sitting back down, he mentioned his heart felt funny, and at the same time all the alarms started going off – his heart went into atrial fibrillation. I really started to question how much a human body could take (his physically and mine mentally). Dr. Dubose explained and reassured us that the heart is really resilient (the brain? not so much. but the heart can “take a joke”). We were told that this was a really common complication that is an easy fix. At that point Susan and I had to get out of the room for a bit just to take a break and try to eat something. Gary stayed with Nathan while Susan and I went to the cafe – and it was within an hour that Gary sent a text saying his heart clicked back into rhythm and things were looking good again. Ahhh, relief.
That was Monday, May 13th, and the last major complication. They talked about moving Nathan out of the ICU, but they were waiting for a bed to open up. It was the perfect scenario – he was well enough to be moved, but he was still under the ICU care.
He was finally moved back to the cardiac floor on May 15th. Things were going well – his kidney and liver function had suffered due to all the blood loss, but the numbers were on the rise with every test. Echocardiograms and CT scans all looked good. He was eating. He got to shower and shave. We were happy.
The last trick was to get his INR level (blood clotting factor) up….but they agreed we could give Nathan injections at home for that (and by “we” I mean “Nathan” – I think we all know how I am with needles). He was finally released from the hospital on Friday, May 17th. Hallelujah!
At-home recovery probably deserves a blog of it’s own – it was not easy. It was super scary to go from round-the-clock care to nothing. I think we ended up back at the hospital the following week 3 different times, just because we weren’t sure what constituted normal healing vs. something to be worried about.
One of the most amazing parts, though, is how much support we had. My parents and brother jumped on a plane as fast as they could to come out and stay with the kids. Friends started a meal train for us, and we had meals delivered to our house every night for over a month. Nathan got a brand new La-Z-Boy, our house got cleaned, the kids got picked up and taken out, people sent cards, gifts, messages and prayers. The list goes on. It was simply amazing, and I’m not sure what we would have done without our village.
It’s hard for me to reconcile – even to this day – how something like this can happen to someone like Nathan. Nathan, who has never smoked a cigarette in his life, who drives exactly the speed limit, who exercises regularly, who eats a vegetarian diet, who doesn’t even drink coffee, and who lives his life always trying to “do the right thing.” But one thing is certain – all the positive choices he’s made in his life combined with his champion attitude all came into play when it counted the most.
On a final note, I truly can not say enough about the team Nathan had Legacy Emanuel. Dr. Hill and Dr. Dubose were amazing, but in each surgery, there was a team of other doctors/specialists (cardiologist, anesthesiologist, nephrologist, PA’s, etc) that all played an important part. Many of those people we never met, so the following is only a partial list. A huge thank you goes out to:
Lauren Ciolli (Dr. Dubose’s PA)
Scott Frazee (Dr. Hill’s PA)
Dan (who we had 4 times)
You are all amazing!