I think I’m ready to write down what happened on Monday and Tuesday. I’ve told the story a few times, and I can already feel the details shifting and turning. I can’t imagine forgetting it, but I know that parts are already getting fuzzy, and I want to remember what happened. What follows is not comprehensive or complete, or appropriately detailed, or properly edited, or medically accurate, or grounds for a lawsuit. It is simply the way things looked from my very narrow perspective. I don’t blame anyone for his death. Quite the contrary: I’m grateful for all that everyone did for him, and am grateful that his presence at the hospital that night meant that he had every chance at life.
We got the call from the cath lab on Monday at 9:00am. This is ‘early’ around our house, though we are always getting up to feed Will. The nurse said that our cath doc and our kidney doc had conferred again and wanted to admit The Boy overnight for hydration. They would administer some intravenous fluids, run some tests, and keep a close eye on him (since his fluid balance is so tenuous). “How soon can you get here?” is a simple enough question, but it takes us a long time to feed and bathe everyone and get the gear and carseats together, etc. We were slightly concerned because the longer admission would mean a higher copay, but we didn’t worry too much about that. My very honest thoughts were: 1.) it will be nice to have some extra help caring for Will tonight, and 2.) I have no clean underwear, as I had set aside time to do laundry that afternoon. So it took a while to cycle some priority items through the wash and get everyone out the door. But by then, the big rush to get us admitted seemed to have passed, and the request was for ‘sometime today, before 6’.
Will had been enjoying his car rides less and less lately, and this one had him screaming almost the entire way. For about 30 minutes, he was sweating and crying and inconsolable. This was disconcerting, though we endured it with him and talked about how we thought that the heart cath would probably end up being more cursory, and hoped it would provide grounds to move the next heart surgery up a few weeks.
We arrived at admitting at about 4, and they tried to figure out where we might go. The Heart and Kidney unit seemed the logical spot, but they didn’t seem to have a place for us. The Wife filled out a medical questionairre, and when the admitting staff realized that The Boy had a persistent eye infection, they suggested that our son needed to be kept from other patients. So this search for a private room only added to the wait. We were told that we’d get in as soon as they discharged the patient who was there now and cleaned it up. But we weren’t given any real timeframe for this. It might be 30 minutes, or it might not be until 9 or 10 o’clock that night. In the meantime, there was really no quiet place to feed and comfort the kids, so both of them were pretty upset as we marked time in the waiting room and listened to the TV blaring on about the fifth anniversary of 9/11.
A little after 5, the bare hospitality kind of left the room as one of the staff told us, “we’re closing at 5:30… you’ll have to find somewhere else.” They promised to overhead page us when the room was available, and said they were sorry. So we trundled the stroller, two fussing kids, and two bulky carseats, and four bags down the hall to the clinic. We needed to give our heroic pediatrician some paperwork, and were looking for a friendly face. The three waited in the hall, while I ran back to the clinic, where I got the ‘we’re closed!’ motion through the glass. I persisted, and they let me in. Our pediatrician was gone for the day, but his lovely wife (also a pediatrician) took the paper and offered some very kind words. When I got back out into the hall, The Boy was finally sleeping, The Girl was still screaming, and The Wife needed to have a break and a chance to clean the puke off of herself.
When she returned from the ER bathroom, my frustration was peaking—why did we rush down here? Where were we supposed to go? With nothing else to do, I suggested we walk up to the cath lab to let them know we were here, and where to find us. Only they weren’t answering the phone. I knew that they must be doing a procedure, but I kept wondering if anyone was back there at all. Finally, we engaged a kind staff person who was walking down the hall. She wasn’t from the cath lab, but she saw our situation and tried to help us. A few minutes later, the Amazing Megan from the cath lab bounded out, and everything was completely better. She stomped and shouted a little with us, made a couple of phone calls, and sent us up to the room (“walk slow, ‘cause they’re just mopping the floor now! I’ll be up later!”).
HKU was a kind of homecoming, as we talked with nurses who remembered us from our week there in June. They took us to a very nice room at the very end of the unit, and we settled in. The admitting nurse made a kingly throne for Will, which he – surprisingly—settled into with great comfort and quiet—and smiles all around. I was worried that he’d be freaked out by the new surroundings, but he was happy as could be. I changed his diaper and we just chilled. Ella got hooked up to some milk, and I ran to the cafeteria before it closed at 7 to bring back a couple of trays.
Megan came up after her shift to welcome us and make sure we were ok. Even better, she began the very important work of figuring out who were the rockingest phlebotomists on duty that night. Will has always been a very tough ‘stick’, and between his small size and poor circulation, it is difficult to start an IV. But Megan made some phone calls, and then finally obliged when we compelled her to ‘go home!’. We were looking forward to seeing her in the morning for the cath.
Our nurse was only on until 11, but she very helpfully got us set up with everything we needed, and taught me how to use the feeding pump. We had previously had huge problems in getting timely feeds for our boy here, and with NPO beginning in the middle of the night and timing being critical, we had opted to bring a cooler for breastmilk and handle this ourselves. Since we’d been feeding him for the last two months, this was easier, anyway. In fact, Will took about 20 ml by bottle from his mother, which impressed me greatly, considering the day he was having.
We were happy enough to wait a couple of hours for the IV, since we didn’t want a protracted and painful experience for Will. One of our friends from the Transport Team came up at about 9, and our nurse assisted him in getting a line in (on only the second try!) and drawing some blood for labs. The Boy screamed at full tilt, of course, but settled down shortly after this.
A bit later, the Resident came by. She was a friendly and lovely and earnest doctor, but she seemed fairly harried. Since neurology and cardiology share call time, she had two beepers which she kept stopping to call about. The Wife gave her all of the info about conditions and meds and treatments that she needed, and we were happy enough to work around the interruptions, but I was a little unnerved about her unfamiliarity with the particulars of HLHS and the exact procedures for the hydration. But she had the orders from our surgeon, and we’d been taking care of Will ourselves, anyway. I didn’t sweat it too much, but I did feel for her predicament. As she left, I wished her a ‘quiet night’, though I did bug her about the fact that we didn’t have the IV fluids starting yet. She mentioned that the order had been written prior to our arrival, and went to check on it.
To be honest, we didn’t mind waiting. Will was in such a charming mood. He had never smiled more, or had such a long period of interaction. He was talking, a
nd cooing. And looked from one person to the next, sharing that wide smile of his as his eyes twinkled. At one point, he even leaned forward and let out a big belly laugh. His first laugh ever! We soaked it up.
But Stacy realized that it was getting late, and that she needed to leave. Visiting hours were over, and it was frowned upon for us to keep Eleanor there overnight. So she took a couple of photos of the babies in their coordinating outfits. Upon being laid next to her brother, Ella promptly jammed his hand in her mouth and started sucking away. As usual, Will didn’t seem to mind this one bit. He was in his element up on that nest in his bed. Stacy held him for a few minutes to say goodbye, and when he started to fuss, she laid him on his side in the flat part of the crib to comfort him and ease any discomfort in his belly that he might have been feeling. His fussiness faded, and he fell asleep. The two girls hurried out, realizing that they’d be hurrying back in just a few hours for the procedure in the morning.
I got Will’s next feed together, and quietly moved him, and checked the placement of his tube and everything and started his next feed. The nurses were changing shift, so I bugged both the incoming and outgoing nurses about his one missing med (they had told us to go ahead and take his home meds back home, but the pharmacy was a little slow in sending up the meds) and –more pointedly—about the IV fluids. A little later, I saw the pump and the fluid bag, but it took about another hour to find a pole on which to hang it.
So it was about midnight when the fluids were finally hooked up, and I started to relax and think about giving him one more feed and then trying to get some rest. Only Will was getting more restless and crying a little bit more. He was hard to comfort, too. Normally, picking him up would provide at least a little calm, but tonight was different. I decided that it was because of the IV in his foot and the accompanying board taped to his leg, and tried my best to change his position in his bed and to talk to him and pat him as he laid there.
But my growing frustration was with the monitor. We’ve been around monitors for his whole life, but this setup seemed to be the worst we’d encountered. The parameters were set differently than we’d have liked, and the alarms seemed ridiculously loud. Our nurses were able to adjust some of the parameters according to the doctor’s orders, but no one seemed to be able to change the volume. So the alarms were blaring away for resp levels that weren’t unusual to us, and the whole thing was obviously upsetting The Boy. Even more concerning was the ever-present problem of false alarms. His oxygen levels were reading at an alarmingly high level, but the numbers were so high (95 to 99) that they just seemed anomalous. Besides, the monitor can sometimes be misleading, if he’s kicking and fussing because he’s upset. The sensor wasn’t able to get a good reading. Still, Stacy had asked the nurse and doctor for a micro-regulator for his oxygen, just to make sure that we could adjust it up or down if need be. This seemed to help a little, but the alarms were still going off. My frustration peaked when his SATs finally dropped to the mid 60’s, and a nurse came running from the central monitoring station to check on him. “Is everything OK?,” is perhaps not the best way to phrase a question to a bedraggled parent at 1:30 who’s trying to comfort a now-hollering baby, and this kind-hearted person got a bit of a blast from me. Speaking over Will’s loud voice, I suggested that things were not, in fact, “OK”. “We ought to be concerned about all of these high SATs, but no one comes running when they’re in the nineties. Now that he’s back in his normal range in the 60’s you all act like there’s a problem!” To make a point, I again asked if there was anything that could be done about the volume, and then suggested that if these alarms were going to be bothering my son all night, we might just turn off the bedside monitor, since it was being watched at the desk. She informed me that the volumes were ‘locked in’, and that turning the bedside monitor off would disable the central monitor. Alas, the more my son’s monitor alarmed, the more he would cry, and the more he would cry, the more the monitor would alarm.
By now, it was getting close to 2am, and I was still on my feet, and was very aware that Will would be getting straight breastmilk at the three o’clock scheduled feeding time, and so would be hungry shortly after that. I was also thinking about what a long day we had ahead of us, and was anxious for both of us to get some sleep. So my sense of frustration was rising: Will had felt more stress, and cried more tears, than I could remember him doing, all to come in for hydration, which hadn’t started until midnight, anyway. I just wanted the monitor and the baby to be quiet so that we could rest. The nurse and I kept conferring about our concerns about his restlessness and disconcerting numbers, and considered calling the doctor. But Will settled down a little bit, and so I laid down to catch a little sleep.
I woke up about 40 minutes later to the sound of his crying, and saw that his nurse was trying to help him. His SATs were still ranging widely, and his breathing was a bit more labored. We ran down the normal list of things: a new diaper, a new position, picking him up and putting him down, speculating that he was just really overtired and simply needed to sleep. Still, she was concerned about him enough that she paged the doctor, who came quickly. We checked on his oxygen again, and tried to troubleshoot the problems we were seeing. Since it was right about 3 o’clock, I wondered if Will was hungry, so I grabbed a syringe to check his stomach content via his NG tube. The residual fluid in his stomach was mostly clear and of minimal volume, so I decided that a meal would settle him out. Before I went to grab some milk, I leaned down to try to comfort him, and he looked at me with a kind of middle-distance stare and seemed content.
But when I stepped toward the cooler of milk, the nurse and doctor started to shout. “This is real, isn’t it?,” the doctor said to no one in particular. The alarms had been going off all night, sometimes because leads had fallen off or somesuch, but now the monitor was showing no breathing and no heartbeat. We later learned that his breathing had stopped, and then he went into complete asystole—no heart rhythm at all.
They hit the ‘code blue’ alarm and started CPR. Within what seemed to be seconds, the room started to flood with people and I started moving furniture out of the way. A minute later, someone said that I might be asked to leave the room, so I stepped out into the hallway. Where there were even more people, and a security guard who was shadowing me. A lot of people were asking me, “are you OK?,” which seemed like a silly question. I paced a bit and watched the scene in the room through the window.
It was pretty chaotic in there, which Stacy later told me is very common when a code team is responding. The doctor in charge of the team was at least a foot taller than everyone else, so I was able to see and hear him as he called for equipment and sent people to get an anesthesiologist, or a mask, or gloves, or just whatever he needed. It was a little unnerving to see so many people standing and observing inside the room, but I knew that they were learning, and were probably there to act as runners. When someone needed something, someone would come sprinting out of the room to return a minute later. So there was a kind of recovery area at the nurse’s station where people could sit on a trash can and catch their breath and where their associates could check on them and make sure that they were alright.
It seemed like time was moving very quickly and very slowly at the same time. I was desperately hoping that t
hey could find some success, so that I could call Stacy. I didn’t want to call her in the middle of a code; I wanted to tell her that Will had crashed, but that he was back or whatever. Instead, the head of the team walked up to me in the hallway. He started making some words, and I leaned in to hear, but they weren’t registering. My legs were really weak, so I asked to sit down, and he helped me to a chair. A bunch of people leaned in while he talked to me. His breath was sour, like a man who’s been working hard at running or lifting, and he forced himself to slow down as he talked to me. He said that they weren’t having much success, and that their protocol was to move patients to the ICU where they would start ECMO. He wanted me to call my wife and confirm that this is what we wanted. I asked him to explain this more, and he said that it was a complete heart bypass that they started while they assembled the surgical team. The intention of all of this was to give his heart every chance to start again. I said ‘OK’, gave him props for the successful intubation he had accomplished earlier with my son, and sent him back into the room.
I called Stacy and woke her up. I told her that Will had coded, and answered a few questions about how and when. I was wanting to make sure that she had a ride—I didn’t want her to drive. But she was insistent that she wanted to be there soon, and that she’d be OK, and didn’t want to wait one minute longer than necessary. She said she’d feed Ella and be right in. She also told me to call our friend Matt. Indeed, she made me promise that I’d do so. I rationalized that Matt used to be a hospital chaplain, and that he lived close, and that he’d have his phone on. But while it was ringing, the reality suddenly set in: I was waking up my best friend in the middle of the night from the hospital where my son was dead on the table and a team was trying to bring him back. He answered with a sleepy ‘hello’, I croaked out some words, and he said he’d be right over.
Now it was real, and I was up again and pacing. More people asking if they could get me anything, and if I was OK. People kept grabbing my elbow, trying to hold on to it, and I kept pulling away and walking up and down the adjacent hall. This was going on for a really long time. I kept looking in to see that someone was doing compressions, and I kept hearing the shouts for ‘another round of epi!’. Finally, the nurse came out to tell me that they weren’t having much success, and that they might want me to come back into the room. She tried to lead me in, but I wanted to walk myself.
The people kind of parted as I walked through, and I was confused. I was expecting that he was dead, but a couple of people were still moving tubes around his face. Then I looked up to see the lead doc. As he walked toward me, my ears tuned in for words of finality. But this was not to be a made-for-TV speech. Because—and I’m forever grateful for this—he was pissed off. Freshly defeated and still livid, he was in shock himself. He rested his large hand on my shoulder, looked down at my face, and shook his head. “We tried everything… gave lots of meds… 15 rounds of epi… but…. I’m sorry…” His voice was failing. I leaned even closer and squinted my eyes so I could hear better. I was still waiting for the right euphemism. Finally, it came: “he’s passed away.”
I think the room kind of cleared out then, except for two nurses I remembered from the CICU. The bed was pulled out at an angle in the middle of the room, so I walked around the head of the bed. I saw his face free of tubes, and then his hair. “Oh, his hair,” I thought, “his beautiful hair! What a waste!” I leaned in close to him in utter shock. He was wrapped in a blanket that was spotted with blood, and his beautiful face was so still. The nurses asked if I wanted to pick him up, which I did. It seemed all at once to be very strange and goulish, and perfectly appropriate. I think Matt arrived sometime around this time, and hugged both Will and I deep sobs welled up from within me. Then I realized that my phone was ringing—my wife. The nurses offered to clean up my son a little for his mother’s arrival, and Matt and another really helpful lady helped me decide what to say to Stacy. In the end, I didn’t tell her that Will was gone, and she didn’t ask. I realized that somehow, she already knew.
Back in the room, I picked Will up again and paced back and forth. This was unbelievable. What had happened? Had we missed something? Had I missed something? How could all of this be over so quickly? It was overwhelming to think of all that he’d been through, only to have his life stop so short.
Our cardiologist, Dr. Mary Donofrio, came to the bed. I was surprised to see her in the middle of the night. At the same time, it only seemed appropriate to have her there. She was wearing scrubs, a hooded sweatshirt, and a pale expression of grief and shock. I’ll always remember that she walked toward me, saying nothing. Instead, she reached up to hug me. I sobbed hard into her shoulder for a minute before we separated and she gaped in disbelief and stroked Will’s head.
I don’t remember much more, but I remember Stacy calling me from outside the hospital, and Matt and I went down to the entrance. When she saw us, she said, “this is it, isn’t it? This is it…” Matt and I both glanced at her and looked away. We rode the elevator up to the third floor and started walking down the hall. Matt took the stroller and Ella, and I stopped Stacy to tell her that our son was gone. I followed her into the room and watched as she leaned over to look into his face. It was the absolutely worst part of the whole experience: “Oh, my love… oh, my love,” she wailed before she clutched him to her chest. The grief was too much to watch; I looked out the window in disbelief.
The next five hours were a blur—our social worker, Heather Langlois, got out of bed to come and sit with us, and she and Matt teamed up to help us in our initial shock and nascent decision-making. We held our boy and rocked him. We took a lock of his hair, and a cast of his little hand, and inked two footprints. Doctors and nurses came by to express their condolences, and their shock, and to express their grief. We were especially comforted to see Will’s favorite nurse Melissa, and Will’s heroic and compassionate pediatrician, Dr. Nathaniel Beers.
One of the most foreign ideas was that we were really done. It took hours to sink into my brain: no cath, no Glenn, no lip closure, no Fontan, no cleft closure, no nose repair, no more trips to Children’s. At the same time, I felt a sense of relief for myself and for my son that we wouldn’t have to go through all of that, which made me feel indescribably guilty. I couldn’t imagine that we would really leave today. We’d walk out the door and be done.
Matt eased the transition by taking us to his home and giving us some space. He made us breakfast, lunch, and dinner, and let us toggle between wailing grief, laughter, phone calls, catnaps, and threadbare, comforting stories of our common friends and experiences. At dusk, and against Matt’s better judgment, we decided to return to a suddenly very empty home, where we stood in front of Will’s lonely bed and wept and wept and wept.