Ayrie’s Last Day, Part II
… a continuation of the previous post. Â It might be wise to have tissues ready.
When we were finally able to go the surgical floor to get Ayrie’s IV in Ayrie was nervous but excited.Â 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.Â 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.Â I always find it endearing. So Tony said, â€œMom.Â This is probably going to be really scary for him.Â I am going to ask for someone to come restrain him.â€
I looked at Ayrie and I said, â€œDo you need someone to hold you honey?â€
Ayrie bravely shook his head no, climbed up onto the stretcher and held his hand out for Tony.Â Even though Ayrieâ€™s lip was trembling a bit, he didnâ€™t shy away from what was going to happen.Â Tony was noticeably impressed and started to put Ayrie at ease by talking about Ayrieâ€™s hair.Â He said â€œAyrie, donâ€™t I wish I had a head of hair like yours!â€ And he pulled off his surgical cap to reveal a closely shaven head.Â He told Ayrie that for some reason he shaves his head in the winter and not the summer, even though that was backwards.Â 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 Ayrieâ€™s eyes for him.Â He told me no, that he wanted to watch what was happening to him.Â Tony was blown away and kept asking, â€œIs this kid really 4?! Â I don’t think I’ve ever had a four year old like thisâ€Â 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.Â It seemed like he really enjoyed this moment of sharing his work with a child.Â He later told me that most kids are scared and withdrawn on the surgical floor but that Ayrie impressed him because he was open and engaged.Â The nurses on the pediatric floor later told me, â€œI donâ€™t know what Ayrie did to Tony in their brief encounter but he cried.Â He really cried when he heard about Ayrieâ€™s death.â€
We went up to the tenth floor next and Ayrie was so anxious to see the new play room!Â 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 couldnâ€™t contain his excitement.Â 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.Â He wanted to bring everything back to his room to play with but it was too late.Â 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.Â 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.Â He made me promise that he could take a shower after his IV was taken out and we were discharged.Â I promised him that there was no way we would leave the hospital without him taking a shower.Â Â More excited anticipation.Â 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.Â He started to get very relaxed. A little too relaxed for Maryâ€™s liking, I think.Â So we pepped him back up with tales of wild run away hospital beds and he was laughing and joking with us.Â 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.Â 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.Â 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 andÂ wrapped Ayrieâ€™s elmo in the bright green baby blanket that we had brought and I placed it under his arms. Â He smiled dreamily.Â But after a few minutes he said, â€œMom?Â I want you to have Elmo.Â He kept me safe and cozy all day on the airplane and all night tonight in the hospital.Â Elmo wants you to be safe and cozy now.â€Â I tried to refuse but he insisted so I held Elmo for a few minutes in my hospital bed.Â But it didnâ€™t feel right.Â Ayrie needed to be safe.Â I told Ayrie so.Â That it was so important to me that he be safe and cozy.Â He assented and tucked Elmo back under his arm.Â It was a touching moment.Â It was 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 wasnâ€™t asleep long before he coughed.Â It sounded strange.Â Like there was something lodged in his throat.Â I sat up straight, heart pounding, adrenaline rushing.Â I can feel it all over again as I type these words.Â I leapt out of bed and crossed the few feet between us, picked him up and started banging on his back.Â Was he choking?Â I didnâ€™t know.Â I just tried to hold him tight and dislodge whatever was making him cough.Â But he quickly became rigid, he was crying, sweating and his eyes were as big as they could be.Â Terrified.
The nurse came into the room and tried to give him an oxygen mask.Â He hit it away.Â Fought us.Â Wanted nothing to do with it.Â All the time his body was not his own.Â It was strong, flailing, and he was still Terrified.Â In retrospect, life was leaving him in this moment.Â But I didnâ€™t know it.Â I just knew that my son was not okay.
I didnâ€™t sleep for 12 days after he died.Â This was the moment that I replayed over and over in my mind.Â He was so scared.Â He wouldnâ€™t let us help him.Â I couldnâ€™t comfort him.Â His eyes got heavier and heavier until they closed.Â He oxygen level plummeted. Even though I was with him and holding him, he was alone.Â It felt like he died alone.
I was so focused on Ayrie that I am not sure what happened next.Â The resident came in.Â A code blue was called.Â People started streaming into the room.Â I tried to get out of the way.Â I realized that I had heard dozens of code blues during our hospital stays but had no idea what they meantâ€¦ that a kid was near death.Â That family members were dying on the inside too.Â The fear.Â The heightened energy.Â The calm but panicked medical professionals.
So the people in their blue and green scrubs fill the room.Â I gwent back to Ayrieâ€™s side and held him while a man tried to help him breath by bagging him.Â It didnâ€™t work.Â So they tried to put an unobtrusive tube in to open the top of his airway while they bagged him.Â It didnâ€™t work.Â Inessa came in, the Nurse Anesthetist, and took over.Â She tried to intabate him and couldnâ€™t.Â She kept calling for smaller and smaller threads.Â Sometimes they could find what she was asking for.Â Sometimes they couldnâ€™t.Â Ever moment seemed precious and too many of them seemed wasted.Â I was holding tight onto Ayrieâ€™s body from the side of the bed while they worked on his airway from the head of the bed.Â Versed was fed into his IV port to help him relax.Â To help him forget in the case that he woke up.
I was so scared.Â I was so focused on Ayrie.Â My body has never felt like it did.Â My mind kept talking to my body.Â â€œItâ€™s okay,â€ I would say. â€œI know you are scared but he is going to be okay.Â There is no way he is going to die.Â He lost his breath in one of the best pediatric airway hospitals in the world.Â There is no way that he isnâ€™t going to pull through this.â€Â I really believed that for a long timeâ€¦ for a few minutesâ€¦ who knows?
But when Dan hurried into the room with an emergency hand surgery kit I knew that we were in trouble.Â They were going to put a tracheotomy into Ayrie right there in the bed.Â I left Ayrieâ€™s side, distraught.Â He was long gone.Â Passed out from lack of oxygen, full of drugs.Â Likely dead but I didnâ€™t know it at the time.
I paced.Â And paced.Â They couldnâ€™t!Â They could not put in a tracheotomy!Â It would make the RRP worse.Â He would die a slow death from lunch cancer.Â No.Â No.Â I got Danâ€™t attention and begged him, â€œPlease, donâ€™t.Â Please, wait.â€Â He looked at me.Â He seemed so young.Â He told me that it was a matter of life and death.Â But I could tell it was something he didnâ€™t want to do until he had to.Â He didnâ€™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.Â I couldnâ€™t be witness to this.
When I left the room I texted people.Â I am not ever sure who.Â Emily and Ian?Â Did I call people?Â I donâ€™t knowâ€¦ I just remember finding a text later in my â€˜sent boxâ€™ on my phone that said, â€˜ayrieâ€™s not okay.â€Â Thatâ€™s all I could write.Â My hands were shaking.Â I paced the hallway.Â I couldnâ€™t stop moving or I would fall apart.Â I think I was in peopleâ€™s way but no one looked at me.Â Or spoke to me.Â I was like a ghost hovering in the space of the hallway outside Ayrieâ€™s room.
I tried calling someone I know who is a chaplain.Â She didnâ€™t answer and I felt relieved.Â I realized when I felt the relief that I wanted to be alone in the moment with Ayrie.Â Just the two of us.Â No one elseâ€™s energy to interrupt the delicate and powerful understanding that Ayrie and I had.Â We had the understanding in life.Â I had no idea it would continue into his death.Â I just knew it was important enough for me to honor in that moment.Â To be present with Ayrie.
So I keep pacing.Â I look at the clock.Â I try to swallow but my throat is dry. My tongue is much too big for my mouth.Â My hands are shaking.Â My stomach is closing in on itself over and over again.
Someone else enters the room.Â Someone from Mass General.Â She seems to be in charge.Â I hear her say that they canâ€™t find a pulse.Â They are going to stop what they are doing every two minutes and listen for a pulse.
Oh my god.Â He has no pulse.
I call my Aunt Laura who was supposed to meet me in the hospital at 9am that morning.Â Sheâ€™s two hours away and even though it is maybe 3am, I ask her to come now. Come as quickly as you can.Â Iâ€™m crying and I canâ€™t say anything else.
I am not sure when, exactly, Ayrie passed away.Â I donâ€™t even know the time of death.Â 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?Â Â Itâ€™s a medically important time, I suppose.Â Important for documentation.Â Â But not really important or relevant to me.
Itâ€™s chaos in there.Â No one knows what to do to save him.Â They are scared.
It took so long for Dr. Hartnick to get there.Â Or it took a few minutes.Â I honestly donâ€™t know.Â 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.Â And it was surreal.Â I remember everything he was wearing.Â His jeans.Â His shoes.Â I wondered how he decided what to wear.Â 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.Â If they were, if a gesture was offered, I donâ€™t remember.Â I remember that there was an unspoken agreement between us that I was not the priority, Ayrie was.Â That I trusted him.Â That this was serious.
Dr. Hartnick walks into the room and there is a calm that descends.Â I canâ€™t hear their words.Â I canâ€™t feel their fear.Â I can feel a seriousness fall over the room.
I am sitting in the hallway now.Â Sometimes I am laying in the hallway.Â People ask if I want a chair, but I donâ€™t.Â My body is wound so tight.Â Itâ€™s as though I have to physically hold myself together so that I donâ€™t literally fall apart.Â Did someone give me tissues?Â I donâ€™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.Â So much pain.
Dr. Hartnick walks out of Ayrieâ€™s room.Â The room is bright.Â The hallway is dark.Â He is tall and broad shouldered.Â He made such an imposing figure, backlit, walking towards me where I was balled up on the floor.Â Iâ€™ll never forget that image.Â I was so relieved that he was there.Â So grateful that my sonâ€™s fate was finally in his hands.
â€œIs he dead?â€ I asked.
â€œNoâ€ he said slowly.
I was relieved.Â A bit.Â But not quite.Â I wasnâ€™t ready to hear the words but I could already sense that Ayrie wasnâ€™t coming back.
â€œIf itâ€™s time to call time of death, call it.â€ I said.Â â€œI choose quality over quantity.â€
I donâ€™t know if thatâ€™s exactly what I said, or if what follows is what he said.Â But itâ€™s what I remember.Â 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.Â 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 didnâ€™t know it until the moment came.
â€œHeâ€™s not dead but you have some decisions to make.Â We are breathing for him through the tracheotomy that we cut and we are doing chest compressions.Â We can do this all night.Â We can do this for as long as you want us to.Â But I am worried about the quality of the oxygen getting to his brain.Â The oxygen that his brain gets from us breathing for him and doing chest compressions isnâ€™t the same as the quality of oxygen his brain would be receiving if he was breathing on his own.â€
I was sobbing.Â I took a deep breath to get out these words.
â€œI know you are not a God.Â I know you are not infallible.Â But we fly here because I trust you.Â What do you think we should do?â€
â€œI think we could try for 10 more minutes.Â But after that I would be worried about the possible extent of the damage to his brain.Â But this is completely your choice.â€
I nodded.Â I am pretty sure that I had snot running out of my nose.Â That I could barely see him through my tears.Â I was still on the floor and he was down at my level in the semi-dark hallway.
â€œOkay. Then letâ€™s do 10 minutes.â€
He nodded.Â I think he patted my leg or gave me some reassuring touch.Â He strode back into the room calmly and confidently.Â I appreciated how he carriedÂ himself.Â How he placed the decision in my hands.Â How he was honest but gentle with me.
At that point I remember searching myselfâ€¦â€Nora, you always wondered if you would turn to God at a moment like this.Â Is there any part of you that wants to pray?â€
There wasnâ€™t.Â And that was okay.Â What I wanted to do was concentrate as hard as I could on Ayrie.Â On mentally being with him.Â On opening my mind and letting him know that I was with him.
Just before the 10 minutes was up I started to panic.Â It was too late.Â I didnâ€™t want them to bring Ayrie back anymore.Â Somehow I knew that he was gone.Â That bringing him back at this point would be wrong.
Mary, the nurse, was sitting with me.Â I am not sure how soon she joined me after Dr. Hartnick left.Â In retrospect, I imagine that he went back into Ayrieâ€™s room and asked Mary to join me.
Seeing my panicked agitation she offered to go tell Dr. Hartnick to stop.
â€œNo.Â I trust him.Â I told him 10 minutes and weâ€™ll do that.â€Â 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.Â I am not sure that this happened, but itâ€™s become part of the story that I tell myself.Â We decided that last moment together.
What happened next?Â I donâ€™t know.Â People were staring to leave the room. Deflated.Â The mood was depressed.Â People were even crying.Â Some may have offered condolences.Â Iâ€™m not sure.Â My eyes were unfocused, starting ahead of me.Â I didnâ€™t know what to do with myself.
Eventually I was told that I could see Ayrie.Â Was this 5 minutes after they called time of death?Â And hour?Â I have no idea.Â And I donâ€™t know what I did waiting for that moment except cry in the hallway and stare off into space.Â Â Trying to wrap my head around what had happened.Â I might have even called people to let them know he died.Â Iâ€™m not sure.
I walked over to the hospital bed, grateful that the sheet was pulled up tight to his chin so that I couldnâ€™t see the hole that they had cut into his throat.Â But even so, I could see delicate blood splatters on the sheet and his face was peaceful but swollen, like heâ€™d been crying.Â His skin was damp and cool and I remember saying to whoever was in the room with me, â€œThis is what a cold sweat feels like.â€Â And then I wondered why I had just said that.Â Nervousness, I guess.
I was crying and stroking his cheeks and hair. Â I was beside myself. Â I was sick with grief. Â But through my sobs I heard him say, as clear as anything that he ever said, “I will be back mom.” Â And because I was so beside myself, I didn’t have a filter to judge or dismiss the message. Â Instead I kept telling himÂ out-loud,Â over and over as I sobbed, “Okay. Â Then I will keep my heart and my mind open so that I will recognize you. Â I love you. Â I will do everything I can to watch for you. Â To see you when you come back.” Â 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. Â 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.Â 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. Â Sometime I still expect to see him. Â Sometimes I see him in a flash across Shiya’s face.
This is such a heartbreaking and vivid account, and so courageous of you to write it. Thank you for all you share with us.
And you wondered why I said you are such an inspiration to me . . . your courage in making a heartbreaking decision of absolute love for Ayrie is something I shall never forget . . .
Such a moving, heartfelt, loving, difficult and beautiful writing. Thank you so much for sharing your story and your love for your son. You were so amazingly connected and I am so moved by that connection. I believe Ayrie when he says he is coming back and that you will have the open and loving heart that you already possess to be with him when he does. Sending much love to you in your grief.
Nora, the telling weaves between past and present tense so fluidly as though I am with you as it is happening and also listening to you tell about it in the past. As I was reading I was seeing you on the floor and hoping Dr H had lay down next to you and so relieved to read he did. I relaxed reading that part. I had to stop many times while reading this to clear my eyes of tears so I could see the words.
Nora, you keep your promise to Ayrie beautifully. Being open to these moments of connectedness, like Ayrie’s sunset and nurturing Shyia’s insights, is challenging, mindful work, but you are delivering on your promise everyday.
Love, love, love you.
Nora- Thank you for sharing this. It is so hard to imagine this, enduring this, having to answer the question posed to you by Dr. Hartnick. Having to be clear in your heart what your decision is/was. I was glad to hear Mary was the nurse- she was our nurse the night Adrien crashed after her reconstruction. Her response was quick, directed. She was comforting as we worked to get her back, stable. I am glad she was there for comfort when you needed her. This story is all I thought about when I lay at MEEI with Keva 2 weeks to the day after Ayrie’s death. It distracted me from sleep, haunted me. To hear the story somehow eases the impact when I think about being in the building. Knowing Dr. H was there helping, working, leading. It is a comfort to those of us who will be there again for more surgeries, hopefully no emergencies! -universe willing. I wish I had known you as I do now and could have made the 40 minutes to you to support you the next hour waiting for family… All I can do now is cry and send you a virtual hug. Thanks for sharing this story. It has made me think- will I know when to say when if it comes to that? I pray I never need to know. Sorry you had to. As always, amazed by your strength.
Tears. Tears for you and the nurses and Dr H. Tears for Shiya and Emily and Ian. Tears for me too. If my child ever has to leave me, I wish it to be as powerful and spiritual as you have had here. Thank you for reliving this for us, for you, for the grown Shiya who will read it someday. You are beautiful, Nora, in so many ways. I was there in this retelling of history, feeling (a small portion of) it with you…may your spirit be lifted and filled with Light…
Nora you asked me at some point to share my memories of that day……. I arrived in Boston around 3:30am and met a OR nurse (that worked with Dr Hartnick)going into work. She took the time to bring me up to the 10th flr. The Unit was locked but I could see you standing in the hallway in front of the nurses station dazed and alone. While I waited for someone to unlock the door I tried to think of some comforting words but nothing came to me…I was in shock. We embraced and cried alot. I went into see Ayrie and I stroked his hair and gave him lots of kisses from his family and thanked him for being in our lifes. We than gather some of his things and packed your suitcases. After that Nurse Mary asked me to distract you while they needed to prepare to move him. We ended up down the hallway talking/listening to the female anthesist. The entire staff were concerned for you. They could not say enough about you and Ayrie and how much you both meant to them. I was able to see Ayrie again and say goodbye. I then realized I needed to move my car off the street when I came back to the Unit you were gone.(so I am unable to fill in that time slot)Dr Hartnick was on the Unit and offered a hug and told me Ayrie was special to him. The staff was going into a debriefing this was around 6:45am. I met up with you in the social workers office…lots of phone calls and decisions to to be made. One of the hardest things to do was to leave the hospital….we decided to take one step at a time. We crossed the street stopped and cried….we forced ourselves to get the next street corner stopped and cried all the way to the motel. Everyone in the hospital could not praise you enough and mentioned many many times how great a parent you are. Thank you for bringing Ayrie into our life …Love Ayries Great Aunt Laura
nora…it is early morning and my mother is playing Bach on piano in the other room, and i am thinking about how she told me that when she plays she sometimes finds herself naturally praying for someone, and i think whether she knows it or not right now you are in her Bach prayers…and i just want you to know that i do believe that in truth, hearts are merged, hearts are One, there is no true boundry between your heart and mine, Ayrie’s heart and yours and ours, Ayrie and all of Life…i don’t know how it works, how our small heads attempt to make sense of it, but its something about Love…and i touch on it sometimes, and this is one of those times, and it is as precious a feeling as i know, this melting into one another.
the cracking open, the unfathomable sorrow, pain and broken heart..and nestled inside there, a jewel that that makes our heart and soul expand …thanks to Ayrie, and to you…I love you both so. I am so grateful.
I started and stopped three times before I could read the whole thing. I am sure it was hard to write, and I want to thank you for sharing. I keep thinking about Ayrie climbing on my back, laughing, at Emily and Ian’s wedding; I can still feel his weight on me, and it’s hard to believe the body that carried that weight is gone. I carry him in my heart.
Nora, How difficult it must have been to find the words to describe those moments; you were right about the kleenex. It’s amazing to me that even in your moments of terror and despair, you were still able to keep it together enough to make the difficult decisions you had to make then. How incredible Ayrie could transcend death to comfort you, as you said “good-bye”. Your personal account of those moments is tragic, yet somehow you managed to demonstrate both courage and hope in the midst of it. Ayrie was blessed to have had you as a mother and have you there with him in his last moments, just as you were to have had that special boy and to have shared all the moments you did, from his first to the last.
Dear Nora, my old friend. I just read the chain of posts, from your current depression to a spiritual awakening, to this heartbreaking account. I am feeling for you and hear your voice so clearly. You have always been this way – strong, spiritual, the most dedicated parent (before you had children, you had lots of students who you took under your wing). I am with you and was so excited to see you were planning on coming to Africa, even if it’s not in my corner! It will happen. The money will come, and Shiya will be older and able to enjoy it more. And You will hear Ayrie everywhere, because that’s how it is with our children. They never really leave us. We are inside them, and them, us. I am so glad you have found a kind of spiritual peace through all of this.