Ayrie’s last day: Part I
This post is so hard for me to write. In part, I don’t want to revisit the details. In part, I can’t remember the details. In part, I am not sure that the details I remember aren’t entirely fictional… but so be it. I will just keep working at putting my words down and not worry about whether they are exhaustive or whether they are an accurate reflection of reality.
Ayrie needed surgery and we needed money. The doctor’s here were abusive to us (awful) which resulted in us getting care from one of the best people I’ve ever met in this world (awesome). Dr. Hartnick’s credentials are impressive. He’s a Professor of Otology and Laryngology and the Vice Chair of Safety and Quality, and of Clinical Research, Department of Otolaryngology at Harvard Medical School. He’s also the Director of the Division of Pediatric Otolaryngology, the Co-Director of the Pediatric Airway, Voice, and Swallowing Center, the Chief Quality Officer, and an Otolaryngology Senior Scientist at Mass Eye and Ear Infirmary (MEEI). Just as importantly, his heart is huge. I learned a lot about heart from him. He put Ayrie first, and he trusted me. He was the first doctor we encountered in two years and three cities who did absolutely everything he could to remove obstacles that might get in the way of Ayrie getting the best possible care. Sometimes this meant opening the OR on a holiday weekend, returning early from vacation, or getting the insurance company off of our backs. He returned every email within hours and always made me feel like we were the most important people he interacted with all day.
As soon as we met him I knew that I needed him to be Ayrie’s surgeon. Not only is he one of the only surgeons in the world who studies ayrie’s rare disease, I trusted his combination of incredible intellect and enormous heart tremendously. Couple that with the fact that the ENT group in Minneapolis sent a certified letter saying that they wouldn’t treat my son, and it became imperative that Ayrie get his care with Dr. Hartnick. But I was making less than $25,000 a year as a graduate student, paying half of that to child care, and raising two kids as a single mom. Health insurance was inconsistent. And I couldn’t move to Boston. I didn’t even have enough money for rent and groceries. So we needed to fly there.
|From thank you and i love you|
This movie shows Ayrie thanking people, in his very quiet voice, for all of the donations to support our travel to Boston. He loved and trusted the people at MEEI as much as I did. (I mean, they did crown him king of the OR!). This video was taken just days before our next and last trip to MEEI.
September 28, 2009
We arrived at the Emergency Room at Massachusettes Eye and Ear in Boston, MA around 7 pm, having taken a taxi directly from the airport. Ayrie’s breathing was labored, with tugging at his sternum and shoulder blades. But despite that fact he was cheerful and playful during his exam. Dr. Hartnick’s resident, Dan (?) came to meet us in the ER and took us into an examination room. Ayrie was pressing the buttons on the chair, making it go up and down, before climbing into my lap. Sitting on my lap and waiting for Dr. ? to examine him, he pointed at the anatomical photographs of the inner ear, the larynx, and asked what all of the parts were and how they worked. We looked at the vocal chords and talked about the papillomas, using words like, “You have bumps that grow on your vocal chords that make your voice quite.” We talked about ye-ye’s prostate cancer and how he too had bumps in his body and had to have surgery the next day to have his bumps taken out just like Ayrie.
Dan examined Ayrie and saw that he was struggling, but also saw that Ayrie was bright, alert, energetic and inquisitive. Ayrie was eager to get up to the room to eat dinner, so I asked if the cafeteria was still open. Dan said that he wasn’t sure and that we were going to hold off on ordering food until we knew whether Ayrie was going into the OR that night or the following morning. I was surprised, now knowing that a surgical procedure that night was even a possibility. But thinking about it, I found that I wasn’t surprised. Dr. Hartnick sensed that I was nervous and would have wanted to make sure that Ayrie was well-taken care of. I realized that he was still in the building when I heard Dan pick up the phone and give a report.
I didn’t listen to the details of it because I was focused more on Ayrie. As was typical in the hospital, we were in our own world. Ayrie had questions, Ayrie gave hugs, Ayrie anticipated every exciting thing that would happen over the next few days. I engaged in his anticipation, feeling loved, respected and safe at MEEI, giving hugs, being strong for him and me.
Dan got off the phone and said that we were going to wait until the next morning. Because Ayrie was getting over a cold and had eaten that day, it was best to wait until the next day so he could be NPO. Since both he and Dr. Hartnick felt confident that Ayrie would be fine waiting until the next day, Dr. Hartnick went home, and Dan gave the nurses the orders to admit Ayrie to the 10th floor.
For some reason, this part always takes a lot of time. They move us to a bed in the waiting area, not a private room. The space is dimly lit with four beds arranged haphazardly. There is only a low wall separating us from the nurses’ station so we can hear everything they are saying. It’s a quite night, so most of the talk is benign gossip about people we don’t know, and neither Ayrie nor I pay much attention to what is being said. We know that Ayrie needs to get an IV port put into his arm in case there are emergencies during the night. This has happened once before, so it’s not a surprise, but Ayrie is nervous. Usually, the IV is put in after he falls asleep from the anesthesia mask used in the operating room and before the procedure. On top of his anxiety about the IV, he is excited to get up the 10th floor because the rooms have been moved and updated and he really wants to take a shower in the new room and play in the new playroom. He has a lot of energy, nervous and excited I assumed, and he keeps hopping off of the stretcher to find some excitement.
When we were finally able to go the surgical floor to get the IV in Ayrie was nervous but excited. It was late enough at night that the floor was quiet, some of the lights were dimmed and it felt special to be down there.
An energetic man came to greet us and introduced himself as Tony. Tony was the anesthesiologist on duty that night. He could have had a nurse anesthetist come out to put Ayrie’s IV in but he’d heard such great things about Ayrie that he wanted to meet him.
I am always called “Mom” at the hospital. It’s an easy way to talk to all of us personally without having to learn our names. I always find it endearing. So Tony said, “Mom. This is probably going to be really scary for him. I am going to ask for someone to come restrain him.”
I looked at Ayrie and asked, “Do you need someone to hold you, honey?”
Ayrie, four and a half years old, bravely shook his head no, climbed up onto the stretcher and held his hand out for Tony. Even though Ayrie’s lip was trembling a bit, he didn’t shy away from what was going to happen. Tony was noticeably impressed and started to put Ayrie at ease by talking about Ayrie’s hair. He said, “Ayrie, don’t I wish I had a head of hair like yours!” And he pulled off his surgical cap to reveal a closely shaven head. He told Ayrie that for some reason he shaves his head in the winter and not the summer, even though that was backwards. Ayrie was laughing with him and was relaxing.
When the med tech came with the supplies and Tony prepared to put the IV in I offered to cover Ayrie’s eyes for him. He told me no, that he wanted to watch what was happening to him. Tony was blown away and kept asking, “Is this kid really 4?! I don’t think I’ve ever had a four year old like this before.” I told him that Ayrie really liked to understand things so after he was done placing Ayrie’s IV he went and got a second IV kit and pulled it apart so Ayrie could touch and feel everything. It seemed like he really enjoyed this moment of sharing his work with a child.
He later told me that most kids are scared and withdrawn on the surgical floor but that Ayrie impressed him because he was open and engaged. The nurses on the pediatric floor later told me, “I don’t know what Ayrie did to Tony in their brief encounter, but he cried. He really cried when he heard about Ayrie’s death.”
We went up to the tenth floor next and Ayrie was so anxious to see the new play room! The nurse followed him into the playroom trying to get his vitals and had to take his blood pressure over and over again because Ayrie couldn’t contain his excitement. He pointed at every single toy in the room and told me whether it used to be on the old play room too or whether it was a new toy. He wanted to bring everything back to his room to play with but it was too late. So Mary promised him that if he picked out his favorite toys, she would lay them out by his bed while he was sleeping so that it would feel just like Christmas in the morning. Ayrie glowed at the idea and picked out a set of train tracks.
Back down the hall in his room he had to check out the new bathroom and the new shower. He made me promise that he could take a shower after his IV was taken out and we were discharged. I promised him that there was no way we would leave the hospital without him taking a shower. More excited anticipation. More glowing.
Little did I know at this time that he would only be alive for four more hours.
The head nurse found Ayrie some food and Ayrie relaxed on his bed, eating his chips and sandwich, watching a movie. He started to get very relaxed. A little too relaxed for Mary’s liking, I think. So we pepped him back up with tales of wild run away hospital beds and he was laughing and joking with us. Mary was satisfied that his energy level picked up so quickly and that he seemed like the same Ayrie that she remembered from past visits. But just to be safe, I asked her to adjust all of the monitors (pulse, heart rate, respirations, pulse ox) to narrower, more conservative ranges. If there was even a hint of trouble I wanted to know about it.
Soon it was time for sleep to I tucked Ayrie in and wrapped Ayrie’s Elmo in the bright green baby blanket that we had brought and I placed it under his arms. He smiled dreamily. But after a few minutes he said, “Mom? I want you to have Elmo. He kept me safe and cozy all day on the airplane and all night tonight in the hospital. Elmo wants you to be safe and cozy now.”
I tried to refuse but he insisted so I held Elmo for a few minutes in my hospital bed. But it didn’t feel right. Ayrie needed to be safe and I told Ayrie that it was so important to me that he be safe and cozy. He assented and tucked Elmo back under his arm. It was a touching moment. One of those times when he felt older than me, as though he was my caretaker as much as I was his.
He drifted off to sleep and wasn’t asleep long before he coughed. It sounded strange. Like there was something lodged in his throat. I sat up straight, heart pounding, adrenaline rushing. I can feel it all over again as I type these words. I leapt out of bed and crossed the few feet between us, picked him up and started banging on his back. Was he choking? I didn’t know. I just tried to hold him tight and dislodge whatever was making him cough. But he quickly became rigid, he was crying, sweating and his eyes were as big as they could be. Terrified.
The nurse came into the room and tried to give him an oxygen mask. He hit it away. Fought us. Wanted nothing to do with it. All the time his body was not his own. It was strong, flailing, and he was still Terrified. In retrospect, life was leaving him in this moment. But I didn’t know it. I just knew that my son was not okay.
I didn’t sleep for 12 days after he died. This was the moment that I replayed over and over in my mind. He was so scared. He wouldn’t let us help him. I couldn’t comfort him. His eyes got heavier and heavier until they closed. He oxygen level plummeted. Even though I was with him and holding him, he was alone. It felt like he died alone.
I was so focused on Ayrie that I am not sure what happened next. The resident came in. A code blue was called. People started streaming into the room. I tried to get out of the way. I realized that I had heard dozens of code blues during our hospital stays but had no idea what they meant that a kid was near death. That family members were dying on the inside too. The fear. The heightened energy. The calm but panicked medical professionals.
So the people in their blue and green scrubs fill the room. I went back to Ayrie’s side and held him while a man tried to help him breath by bagging him. It didn’t work. So they tried to put an unobtrusive tube in to open the top of his airway while they bagged him. It didn’t work. Inessa came in, the Nurse Anesthetist, and took over. She tried to intabate him and couldn’t. She kept calling for smaller and smaller threads. Sometimes they could find what she was asking for. Sometimes they couldn’t. Ever moment seemed precious and too many of them seemed wasted. I was holding tight onto Ayrie’s body from the side of the bed while they worked on his airway from the head of the bed. Versed was fed into his IV port to help him relax. To help him forget in the case that he woke up.
I was so scared. I was so focused on Ayrie. My body has never felt like it did. My mind kept talking to my body. “It’s okay,” I would say. “I know you are scared but he is going to be okay. There is no way he is going to die. He lost his breath in one of the best pediatric airway hospitals in the world. There is no way that he isn’t going to pull through this.” I really believed that for a long time…for a few minutes…who knows?
But when Dan hurried into the room with an emergency hand surgery kit I knew that we were in trouble. They were going to put a tracheotomy into Ayrie right there in the bed. I left Ayrie’s side, distraught. He was long gone. Passed out from lack of oxygen, full of drugs. Likely dead but I didn’t know it at the time.
I paced. And paced. They couldn’t! They could not put in a tracheotomy! It would make the RRP worse. He would die a slow death from lunch cancer. No. No. I got Dan’t attention and begged him, “Please, don’t. Please, wait.” He looked at me. He seemed so young. He told me that it was a matter of life and death. But I could tell it was something he didn’t want to do until he had to. He didn’t want to cut Ayrie until there were no other options.
So when he told people to prepare for the surgery I left the room. I couldn’t be witness to this.
When I left the room I texted people. I am not ever sure who. Emily and Ian? Did I call people? I don’t know…I just remember finding a text later in my â€˜sent box’ on my phone that said, “Ayrie’s not okay.” That’s all I could write. My hands were shaking. I paced the hallway. I couldn’t stop moving or I would fall apart. I think I was in people’s way but no one looked at me. Or spoke to me. I was like a ghost hovering in the space of the hallway outside Ayrie’s room.
I tried calling someone I know who is a chaplain. She didn’t answer and I felt relieved. I realized when I felt the relief that I wanted to be alone in the moment with Ayrie. Just the two of us. No one else’s energy to interrupt the delicate and powerful understanding that Ayrie and I had. We had the understanding in life. I had no idea it would continue into his death. I just knew it was important enough for me to honor in that moment. To be present with Ayrie.
So I keep pacing. I look at the clock. I try to swallow but my throat is dry. My tongue is much too big for my mouth. My hands are shaking. My stomach is closing in on itself over and over again.
Someone else enters the room. Someone from Mass General. She seems to be in charge. I hear her say that they can’t find a pulse. They are going to stop what they are doing every two minutes and listen for a pulse.
Oh my god. He has no pulse.
I call my Aunt Laura who was supposed to meet me in the hospital at 9am that morning. She’s two hours away and even though it is maybe 3am, I ask her to come now. Come as quickly as you can. I’m crying and I can’t say anything else.
I am not sure when, exactly, Ayrie passed away. I don’t even know the time of death. But I am quite certain that he died long before they called his time of death so in a way, what does that exact time mean? It’s a medically important time, I suppose. Important for documentation. But not really important or relevant to me.
It’s chaos in there. No one knows what to do to save him. They are scared.
It took so long for Dr. Hartnick to get there. Or it took a few minutes. I honestly don’t know. I just know it felt like days passed between when he was paged and when I he finally walked through the doors to the pediatric hallway. And it was surreal. I remember everything he was wearing. His jeans. His shoes. I wondered how he decided what to wear. If he leaves out clothing in case he gets paged and has to rush in to the hospital.
I think I looked at him and no words were spoken. If they were, if a gesture was offered, I don’t remember. I remember that there was an unspoken agreement between us that I was not the priority, Ayrie was. That I trusted him. That this was serious.
Dr. Hartnick walks into the room and there is a calm that descends. I can’t hear their words. I can’t feel their fear. I can feel a seriousness fall over the room.
I am sitting in the hallway now. Sometimes I am laying in the hallway. People ask if I want a chair, but I don’t. My body is wound so tight. It’s as though I have to physically hold myself together so that I don’t literally fall apart. Did someone give me tissues? I don’t remember having tissues but I must have had them.
I was overwrought with grief for Shiya, unsure if he would even know who he was if not measured in relationship to his brother. So much pain.
Dr. Hartnick walks out of Ayrie’s room. The room is bright. The hallway is dark. He is tall and broad shouldered. He made such an imposing figure, backlit, walking towards me where I was balled up on the floor. I’ll never forget that image. I was so relieved that he was there. So grateful that my son’s fate was finally in his hands.
“Is he dead?” I asked.
“No” he said slowly.
I was relieved. A bit. But not quite. I wasn’t ready to hear the words but I could already sense that Ayrie wasn’t coming back.
“If it’s time to call time of death, call it.” I said. “I choose quality over quantity.”
I don’t know if that’s exactly what I said, or if what follows is what he said. But it’s what I remember. I remember that without knowing ahead of time that I was going to say it, I was telling him that I wanted to release Ayrie when it was his time, not to hold him on this earth for me, for those that loved him. In retrospect this was something I had given a lot of thought to and apparently had come to some sort of inner resolve around the decision, even though I didn’t know it until the moment came.
“He’s not dead but you have some decisions to make. We are breathing for him through the tracheotomy that we cut and we are doing chest compressions. We can do this all night. We can do this for as long as you want us to. But I am worried about the quality of the oxygen getting to his brain. The oxygen that his brain gets from us breathing for him and doing chest compressions isn’t the same as the quality of oxygen his brain would be receiving if he was breathing on his own.”
I was sobbing. I took a deep breath to get out these words.
“I know you are not a God. I know you are not infallible. But we fly here because I trust you. What do you think we should do?”
“I think we could try for 10 more minutes. But after that I would be worried about the possible extent of the damage to his brain. But this is completely your choice.”
I nodded. I am pretty sure that I had snot running out of my nose. That I could barely see him through my tears. I was still on the floor and he was down at my level in the semi-dark hallway.
“Okay. Then let’s do 10 minutes.”
He nodded. I think he patted my leg or gave me some reassuring touch. He strode back into the room calmly and confidently. I appreciated how he carried himself. How he placed the decision in my hands. How he was honest but gentle with me.
At that point I remember searching myselfâ€¦”Nora, you always wondered if you would turn to God at a moment like this. Is there any part of you that wants to pray?”
There wasn’t. And that was okay. What I wanted to do was concentrate as hard as I could on Ayrie. On mentally being with him. On opening my mind and letting him know that I was with him.
Just before the 10 minutes was up I started to panic. It was too late. I didn’t want them to bring Ayrie back anymore. Somehow I knew that he was gone. That bringing him back at this point would be wrong.
Mary, the nurse, was sitting with me. I am not sure how soon she joined me after Dr. Hartnick left. In retrospect, I imagine that he went back into Ayrie’s room and asked Mary to join me.
Seeing my panicked agitation she offered to go tell Dr. Hartnick to stop.
“No. I trust him. I told him 10 minutes and we’ll do that.” But as I said that I felt sure that they would not be brining Ayrie back.
I remember dr. Hartnick coming out after the 10 minutes and asking if it was still my decision to let Ayrie go and I said yes. I am not sure that this happened, but it’s become part of the story that I tell myself. We decided that last moment together.
What happened next? I don’t know. People were staring to leave the room. Deflated. The mood was depressed. People were even crying. Some may have offered condolences. I’m not sure. My eyes were unfocused, starting ahead of me. I didn’t know what to do with myself.
Eventually I was told that I could see Ayrie. Was this 5 minutes after they called time of death? And hour? I have no idea. And I don’t know what I did waiting for that moment except cry in the hallway and stare off into space. Trying to wrap my head around what had happened. I might have even called people to let them know he died. I’m not sure.
I walked over to the hospital bed, grateful that the sheet was pulled up tight to his chin so that I couldn’t see the hole that they had cut into his throat. But even so, I could see delicate blood splatters on the sheet and his face was peaceful but swollen, like he’d been crying. His skin was damp and cool and I remember saying to whoever was in the room with me, “This is what a cold sweat feels like.” And then I wondered why I had just said that. Nervousness, I guess.
I was crying and stroking his cheeks and hair. I was beside myself. I was sick with grief. But through my sobs I heard him say, as clear as anything that he ever said, “I will be back mom.” And because I was so beside myself, I didn’t have a filter to judge or dismiss the message. Instead I kept telling himout-loud,over and over as I sobbed, “Okay. Then I will keep my heart and my mind open so that I will recognize you. I love you. I will do everything I can to watch for you. To see you when you come back.” I don’t know where these words came from, but they poured out of my mouth and I just kept repeating them in the empty room. It felt like the most important promise that I had ever made.
I went back to say goodbye to his body three times, but it was only the first time that he spoke to me. He looked so alive that I later had to watch them prepare his body for the morgue just to make sure that I believed completely in all parts of my being that he was dead.
It’s funny though. Sometime I still expect to see him. Sometimes I see him in a flash across Shiya’s face.
Nora, I think it is very brave of you to write about it. i think it’s brave for you to share your process too.
Yes, so brave. Awaiting part two…
Thanks for the encouragement! You help me keep writing and the writing is good for me… (i never thought I would say that!!)
I was with Jessie, my sister, when she fell abruptly to the ground gasping for breath, dying before my eyes. It IS so brave of you to write this, and for me, it was also so very helpful to talk through the experience, so I hope you too find this to be freeing. It is such a gift for all of us, hearing of these precious moments you were having with Ayrie, and ‘seeing’ so many of the wondrous aspects of Ayrie radiating into the night. It took me a long time to get to the point where I could tell the whole story, I felt so responsible for her death, so stupid and little that I couldn’t do what was necessary to save her in those last moments. I felt so heartbroken that I didn’t get to say goodbye, so angry with myself for not realizing what was happening. Nora, I think you are so very amazing, and I love seeing how Ayrie stays strong and well in spirit through you and with you. Thank you for all that you are doing, for yourself, and for all of us too, you are growing so much, and so fast in this journey.