In my memory, this is what he said, as Paul cried and I sat frozen and paralyzed unwilling to acknowledge what he was saying as the truth..."You know that Zackary was born with several anomalies and a cardiac defect that was repaired at birth. He was admitted here with pneumonia and influenza b and was taken to the OR for an emergency intubation (I hated when the doctors reviewed what we already knew). Zackary has a very unusual and difficult airway, and the doctors did have trouble inserting the tube, but they did insert the tube, and for some reason unknown to us, his heart stopped beating."
I can remember my stomach flipped, my eyes closed and Paul cried beside me.
What were they saying....was my son dead? Did we lose him? Was he gone?
"The doctors have been trying to resuscitate him, but is has been a long time and we don't know the impact on his brain. We know that children like Zackary, have had a difficult life of struggles and obstacles and we just can't say what will be the result of this trauma to his brain."
I couldn't speak- in this moment, my world ended. My son, whether I ever saw him again or not, would not be the same....ever. Paul asked if he would be a "vegetable" and the doctor explained what that would mean in medical terms. I asked what was happening now- why was HE out HERE? Seemed like a reasonable question- who was helping my son?
He said that they were still bagging him and doing CPR- they had a team that rotated and took turns. It was now over 30 minutes since his heart stopped. I learned later, that one of the nurses had fainted.
We understood that their goal was to get his heart started by inserting 2 catheters into his right neck (not into his heart, like the illustration), to put him on ECMO (the external lung/heart machine) that would both pump his heart and oxygenate the blood. I had known several cardiac kids on ECMO, so it was familiar to me....I just couldn't believe that our son needed it. His heart had really not been a recent concern of ours. In addition to that, he would remain on the ventilator to breathe for him too- total life support. IF this could be done, he would then need to go to ICU for observation and to assess the damage to his brain.
Then he left, I sat on the floor, resting my head on the bench- I had not cried and I felt numb. This wasn't real. I wanted it to go away. Libbie was there and she and Paul were crying. She rubbed my hair. We looked into the doorway, we waited for more announcements- then they came out to talk to us. We couldn't tell if the news was that our son was dead or that we had witnessed another one of Zack's miracles.
He was alive and on the ECMO machine....he had survived but was on life support. They were going to wheel him back to the ICU in a more critical care room.
I can remember, in that moment, that I let my guard down with the news that Zack was alive, and I sobbed. Paul and I held each other and cried, remarking at how the miracle of our son was proven again to us. We waited by the doors to walk Zack back down the hallway and to see him again- we had no idea what to expect, but we were frantically trying to find where they would be bringing him out. Someone then told us that he was already in the room- so we ran down the hall to see him.
We walked in the room- to a horror of machines, tubes and equipment. It was unlike anything I had seen. While this is NOT our photo above, it is an example of the chaos that surrounded our precious son and allowed him to continue to fight for his life. We were overwhelmed with what had happened and we just wanted to hold Zack in our arms. He was hooked up to so many machines, the best we could do was rub his hair, hold his sweet hand or kiss his face. He had to rods coming out of his neck and it was so disturbing to see all that he had been through in the last hours. It was still early in the morning and we started to learn about the panic that had taken over in the OR only an hour before. We thanked several of the doctors who came in to check on Zack and we learned that the "code" had been run smoothly and without stopping for all 45 minutes. Several of the doctors were amazed he was alive (I thought to myself- "that's my Zackie")
Zack was on heavy medication but I remember that his right arm moved and when I sang the ABC song or Paul whispered "Elmo's World" into his ear, he did open his eyes for a few moments- it was the last time there would be any signs of movement from Zack and I hold those precious memories in my heart. I know he opened his eyes for our voices- I believe that.
He looked so weak, sick and so badly beaten down by all that had happened. I whispered to him that I would stay with him and we needed him to fight- fight like never before. If we had to start all over again, with eating, sitting, walking- I was going to be by his side- we were a team and we could do it again, together. We just wanted him back- in whatever way we could have him.
We sent out the emails, called our family and posted for our friends.
"Last night after having to intubate, Zack's heart stopped and they did CPR for 45min then connected him to a heart/lung machine. We just don't know the effects on his brain. Right now the goal is for him to rest his body and continue to fight the infection in his lungs. More problems have arisen that challenge our little miracle. Looking for another miracle and for our Zack to come home to us. He is barely hanging on. We are a mess and living moment to moment. We miss his smile."
The mad panic around his room was unbelievable. The ECMO machine, required heavy Heparin doses (heart anti-clotting drugs) and a person to run the flow of his blood- they were running his heart for him. The ventilator was at the maximum level and required a team to watch the levels and suction if necessary. They even tried to give him some Ventolin medicine through the vent to try to open his lungs- while they detached the vent, his numbers dropped, and they bagged him through the treatment. He was living moment to moment and we were overwhelmed, scared, exhausted and confused. In additon to all of these new issues, a newer xray showed that his lungs were still extremely infected from both the pneumonia and influenza.
Over the next few hours, some family and friends arrived. We warned them about how Zackie looked, but they all wanted to see him and be there for us. We snuck in 3 people at a time (2 was the max allowed). They stood by his bed and cried and prayed with us.
The main doctor, Dr. P, on Zack's case became increasingly nervous about Zack's brain activity. They put probes on his beautiful curly hair with an horrific smelling adhesive solution. The news of the EEG would make the decision if we should continue care or not. We waited anxiously for the computer to be set up at the head of his bed and show us if we had any reason to hope. The EEG confirmed that there WAS brain activity and that we should continue to provide support for him. We also began to notice that his stomach was getting larger, he was so swollen and his skin was getting taut. He had not had any urine output, indicating that his kidneys and other organs were failing. After using a portable ultrasound, they saw that he had massive internal bleeding that had accumulated in his abdomen. We needed to find a solution to this or his organs would just shut down.
It was maybe around noon at this point and we felt Zack slipping away. We saw how much he had been through and we were faced with decisions about how far we should push him. As a mother, I knew that my son looked tired- about to give up. I started to feel that he was gone, and that maybe I should be kind to him and let him go. My sweet boy had been through so much. My son, loved to play with Elmo, chase his brother and climb the stairs....he loved to run around with the remotes and show me how big his was by feeding himself his pudding. This was not the life that we wanted for him, he had known such joy. Paul was unable to see that he might be gone, he was determined to fight with all that we had. My heart was heavy with conflicting feelings of the deepest love I have ever felt but wanting to hold on to him- did I love him enough to let him go?
We were given the decision to do an emergency surgery to cut open his abdomen and put a drain in to get rid of some of the blood. It would have to be done on his bed, in his room (he was far too fragile to move). The doctor on his case was swaying us to let him go, while the general surgeon (Dr. Kim, in the photo), who would do the operation, when Paul asked him what HE would do, told us "if it was my son, I'd do the surgery". In that moment, I changed my mind and agreed with Paul- Zack was not giving up- he had survived that night in the OR and we had to do all that we could to show him we would fight with him. We were told that he would have to be taken off ECMO to do it- we would have to take the chance and let his heart do the work alone. It was a huge risk and he could die simply from being removed from that machine. Paul and I agreed to do the surgery, and give our son the only chance he had.
We took our time to say our goodbyes and we were preparing ourselves for this to be the last time we would see him alive. We left his room, arm in arm and went to see our families in the waiting room.
I can remember walking down the hall and into the ICU waiting room on the 2nd floor of SickKids- it was so different from how it looked when Zack was first born. My sister had arrived, as had Paul's brother and sister-in-law. My two besties were there together and we had created a small area in the room for our Zackie miracle team. We had been given a locker at this time for some of our belongings, as we didn't have a room anymore. The 4th floor needed us to remove our belongings from that room, so Jill and Kathryn went upstairs to do that for me- I couldn't leave.
I needed time alone, so Paul and I snuck off to the chapel with a tea that someone had gotten for us, to get some private time to just cry and reflect on what was happening and what to tell the other boys. The amazing Chaplin, Michael, was there with us every step of the way- just as he had been at Zack's first weeks of life. The social worker wanted to speak to us about how we were feeling and to offer us help with what to tell the boys. We sat on a park bench in the hallway to talk about death, being honest with the boys and whether we should get them to come down to see Zack. It was a horrible discussion, "how do we tell the boys that their brother is dead?" We even planned that we would get on our bed, where the five of us snuggled together- it was safe. That was where we would tell them the news. We decided it was best to have them remember their brother as he had been at home.
We still hadn't heard any news from his surgery and we were thinking that he had died. We cried, we closed our eyes, we paced the floor waiting for any news we could get.
I can't really remember if the surgeon came out to us in the hall, but I believe he did- I remember being at the glass windows by the ICU when I heard the news....
Zack had survived not only getting off ECMO, but survived the surgery and drainage tube that was now protruding from his abdomen. I laughed and cried all at the same time- I cried out loud that "my amazing son has done it again- he's incredible, he's a miracle- he's my Zackie"- he had once again defied the odds and shown us his strength and determination. We had said goodbye to our son throughout the long day and now we would be able to hold him again. The roller coaster continued to beat us down emotionally, but we clung to any sign of hope and faith. We wouldn't have to tell our sons that their brother had died- not today - he wasn't ready to go.
I remember sliding down the glass wall, closing my eyes with my face in my hands, overwhelmed with the events of the day. It was now later in the day, and we had been through so much since midnight. It was truly the longest day of my life and one that was filled with emotions that I still find hard to put into words. My parents were on a flight home from Dominican and my incredible sister had arranged to get them a golf cart at the airport and an escort to SickKids immediately. They would arrive around midnight and I wonder now, if Zack wanted to wait for his Nana and Poppa to arrive and say goodbye.
We were finally allowed to go back into Zack's room and Paul and I raced each other down the hall. They waved the "call first" rule with us that day and we rushed to see our amazing little boy. Some of the machines were gone, but the bed was a mess from the surgery. They lifted back the blanket for us to see what they had done. It was a horrific sight- a large brownish, suction-looking apparatus was taped to our son's stomach, containing his small bowels, and allowing blood to drain into a container. The blood was flowing out of him and the container filled more and more- it was a good sign. This was what he needed to help his organs have space to function- we got the sign that his kidneys looked like they were working again and his SATs remained as good as we could expect. We waited by his bedside together, taking turns to visit with family outside and wait for my parents to arrive soon.
Zack had made it through the day- and my mood was recharged. I was breathing again. I felt a release in my body, in my heart and in my soul. After 3 days of no sleep or food, I felt ready to fight with Zack- ready to take his lead and do whatever was necessary. I bragged to the incredible nurses and doctors that my son was a fighter, as they nodded in both awe and amazement with all that he had been through and survived.
Our son was NOT going to die today. There was hope, there were small victories and at the heart of it, there was the strength of MY little boy.