T1D Subway Nightmare
TRIGGER WARNING: Article contains content that may be disturbing to some.
This will not be an uplifting post, but the world needs to know and be aware of how fast Type 1 diabetes can take a turn. There is no easy way to write this down. I have been traumatized by this; I can only pray that it will never, ever happen again. Please know that there is no way to judge and say I “should have” or “could have” within the moment, because being in the moment is the real thing and one I would never wish on anyone. An individual with Type 1 can go their entire life and never have this happen, that does need to be noted.
However, this was our day:
It was the day after World Diabetes Day, and we were still in New York City experiencing the opportunity of a lifetime after ringing the NASDAQ bell with Dexcom. My husband had to go on a work event to New Jersey, so he was gone for the day. That left me with the three kids and one of our favorite Type 1 families. It was a rainy day and we decided to head to the famous Carmine’s for an amazing lunch followed by a subway trip to the Children’s Museum.
At lunch, Parker was a perfect 5.3 mmol/L96 mg/dL. He had a lemonade, (which I didn’t carb him for), 1.5 pieces of table bread and ordered a plate of spaghetti with chicken (a Type 1 parent’s cringe-of-carb-meal). I had undercarbed Parker and “winged” it as 35 carbs. I was actually more concerned about Madison’s number as she was in a literal “trance” of carbs and I was afraid of her rising too high.
We walked to Times Square and headed into a main subway entrance. It being this location, it was a busy and very active subway station. The kids (four “sugar babes” and one supportive sibling), all scooted under the “ticket turning thing.” We had one subway pass with money already loaded on it. Janet, (a best friend and the mom whom was with us, went through following the kids). I followed, and then her husband, Damon was last. He only had $0.92 on the card and couldn’t get through, so he went to load his card up. Janet, the kids and I waited by the escalator.
The kids were getting antsy. I was worried Madison was going to go high as she ate such a huge lunch. I glanced at my watch and saw that she was actually looking good, but Parker was 5.1 mmol/L91 mg/dL, diagonal arrow down. At that moment he was being goofy and started to go down the escalator a few steps and then walking up as it went down. I grabbed him and pulled him aside and told him to stay put. I pulled the diabetes backpack to my front and grabbed his tabs. As I went to give him two, my watch vibrated and changed to 2.8 mmol/L51 mg/dL, double arrows down (then I was guilty of saying a bad word). I searched for juice. As I searched, Janet gave three more tabs, equaling 20 carbs.
The hustle began right then (I had used our two juices on two kids earlier and wasn’t sure if I had more. Later I found a third juice in the bag.). It was suddenly time to go and it all happened so fast. As we went down the escalator in an orderly fashion: Damon, in front with the two littles, Addison, Madison, and then Janet stood next to Parker with their arms intertwined. He had eaten the 20 carbs and said he was fine, just quiet. I was last and multi-tasking at my best. With the backpack still forward on me, as we descended down the escalator, I took out the tester kit knowing I needed to test Parker as soon as we stepped off. I opened it up as we stepped off the escalator. I looked to my left and called to Damon, whom was walking towards the subway to stop because I needed to test. He replied, “Now?” “Yes, right now.” Janet said, “I’ve got him. He’s okay.” I had stopped and opened the tester kit, and as I was about to prep, I looked up and instantly knew.
Parker took a step with his left foot and then his right. But his right foot didn’t go forward, it turned horizontal as he stepped. Then it happened … It felt like slow motion and it felt like forever. His knees gave in. His eyes bulged. His head jerked back abruptly. Both arms got contorted. His perfect hands became fists. His back arched. He was stiff. All while his body jerked fast, uncontrollably, and violently. I simply screamed.
As clear and vivid this moment was, the order of the following also seems clouded. I just remember screaming. I knew Janet physically had him in her arms, so he’d be safe from injury. I glanced at the little kids. I screamed Damon’s name. I was trembling uncontrollably and couldn’t pull out the glucagon in the tester kit (which I was still holding). I remember handing it to Damon, while screaming, “No! No! No!” Then we pulled out the red, infamous, life-saving Glucagon kit. I just handed it to him. Parker was now on the ground. Still seizing in Janet’s arms. I had the kit next to me on the ground, while Damon prepped the Glucagon. I continued to scream out. Police were arriving at our side. As a crowd circled around and watched, I remember telling the police to watch the other four kids. That they were ours and to protect them.
My heart was broken. Tears streamed down my face. I was a broken record of few words. “No, no, no! My baby, my baby, my baby! Dear Lord, no! My baby. Damon! Janet! My baby!”
His body continued seizing. I pulled down his jeans on his left side. Damon inserted the Glucagon. It wasn’t an instant fix. He kept shaking. I grabbed the cake gel and squeezed it in his mouth; I was desperate. My only boy wasn’t waking up. (Reflecting on it, I probably shouldn’t have used the gel as he could have choked on it. But I wasn’t thinking about that. I was thinking: he’s had Glucagon. He’s still seizing and he needs more). At that moment he slowed down to slight jerks and trembles. I stopped his pump and noticed he had 3.3 units on board. Then I took the first of many blood sugar checks. After 20 carbs in tabs, Glucagon, 15 carbs in gel, Parker was 2.6 mmol/L46 mg/dL. I vaguely remember the officer on the ground with me telling me there was a physician here and if I wanted his help? “Yes, please. Check his pulse.” I turned to see this man at my son’s head, checking his pulse and breathing. At that exact moment is when I thought, “My baby is in a coma.”
I asked the doctor to stay until EMS got there. There was nothing we could do at that moment except to wait. It felt like forever. We were now circled by police officers. I grabbed his hands. I cried. I laid on him weeping. Janet held me. We waited and waited and waited. I lifted back his left eyelid on his left eye; his eye was rolled back and his pupils were SO bloodshot. In fact, the worst I’ve ever seen. (Later being educated, they were blood shot from straining down so much). EMS arrived 17 minutes later.
They called his name, gently slapped his face and then put something stinky under his nose. He opened his eyes and looked at them. Like a deer in headlights. The fear in his huge bloodshot eyes. The confused look he had. I finally exhaled. They did some work on him, I continued taking blood sugars. He wasn’t coming up. They wanted to give us privacy and asked to head to the ambulance. I placed my hands on the doctors hands and thanked him with tears in my eyes. They weren’t able to bring a gurney up the escalator so he had to be removed in a wheelchair. I told Janet I couldn’t see him like that and not to leave his side. I walked behind with some officers and my two girls. We got to the top, I hugged Janet’s two kids and then held my two girls each individually and asked if they were okay. I asked a few officers to stay with them as I went into the ambulance for privacy. They carried him to a gurney and lifted him in. It was cold. The guilt began to set in.
Parker looked awful. I couldn’t even begin to know how he felt. We sat in the ambulance for 45 minutes testing blood sugars, vitals, and trying to make decisions of what to do. It wasn’t easy. His sugars were up and drastically down (i.e. 5.5 mmol/L100 mg/dL then a 3.1 mmol/L56 mg/dL). He was given three vials of dextrose straight into his IV and then they also started a D5 bag (eventually going through two).
The vomiting from the Glucagon began, thus the sugars continued to rollercoaster. After 45 minutes of back and forth it was concluded we had to take him to Cornell Hospital (New York Presbyterian). Janet and Damon took my girls and Madison’s diabetes supplies. Once we had a plan and we knew Parker would be okay, Janet was going to notify my poor husband. (I couldn’t imagine what it was like for him. He now had to get back into the city as quickly as he could, which still took hours for him).
It was a very long ambulance ride. Parker violently threw up five times in the ambulance. I sat strapped in a five-point harness, feeling helpless as he got sick.
Upon arrival at the hospital and getting a room immediately he was only 4.2 mmol/L77 mg/dL after all of that dextrose and D5 bags. He was cared for, given fluids and liquid zofran, and had his blood checked by me nonstop. We were surrounded by instant support of my local family there and a wonderful soul from Dexcom that came on her own. There was quite a bit of craziness with my husband trying to get there and then how to get my girls as Damon and Janet had a plane to catch. But, it all worked out. The dark circles on his face and knowing how awful he felt was tough.
My extended family and Dexcom took great care of us. About nine hours later we were released and there was a suburban waiting for us to bring us back to our hotel. Our trip was extended another day. Parker was then able to rest his body. I refused to let T1 take the joy out of this amazing trip. We weren’t ending the trip on this note. We are warriors and these sugar babes know how to fight.
I was mad that I swore three times out loud in instant and utter fear while on my knees in the subway. I sat still with my eyes locked on my son and could only clearly hear the officer at my side, while all other noise seemed so mumbled. I clearly remember praying and asking God to protect him and make sure he was okay. When I was in the ambulance I remember asking myself, “Where was God in this? How do we glorify Him in the worst moment of my life?” It was instant. No need to search for answers. 1) The subway we chose was directly next to the police headquarters. Backup was there within seconds. 2) Due to the election, subways had additional officers on watch in full gear. I believe my scream got the police’s attention. They were there immediately. Had we been on the street, we wouldn’t have had the action we did. 3) Due to not having enough money on the subway pass, Damon had to refill it, causing us to wait. Otherwise, we for sure would have been crammed ON the moving subway. 4) The officers made a protective circle around the four kids, keeping them safe and engaged. 5) I had another Type 1 family by my side. They just stepped in taking their roles and helping where they could and knew how. That allowed me to know my other two kids were okay (as I was so worried about their emotional being and their safety) and I got to be in the moment and be “Mom.” Janet, was holding him, so he didn’t fall and get hurt. She was so loving and gentle with him. 6) Parker doesn’t remember a thing. The last thing he remembers was eating lunch. That in itself is a blessing.
I thank the NYC police officers, the Gidner Family, Dexcom (specifically Traci), my NY Murphy family, Ruthie, my husband, who had his own experience of this from a distant perspective, and God for showing me hope and grace in the worst moment in my life.
This is real. This sucks. This can happen. This did happen. This story is our story and I share it openly to you to spread awareness, to educate, and to help in some way. We need a cure!