It’s funny how defining moments in a person’s life can be so vivid and so blank at the same time. I still remember watching my husband slide down the wall and crash to the floor as the doctor gave the diagnosis. “Diabetes”. But the diagnosis wasn’t for him. While Type Two runs in his family, and wouldn’t be an unlikely diagnosis for him – certainly an easier pill to swallow – this was a diagnosis for our son. He was only one.
Type One comes from my side (though I’ve been told that genetic links for Type 1 is up for debate). Either way, as if the diagnosis wasn’t enough in itself, my forty-seven year old cousin, the only one I had known to that point with type-one diabetes, had just died a few weeks earlier — from diabetes related complications. I had just seen her a few months earlier (after not having seen her for years) at a family reunion. She came up to me at one point annoyed at the fact that some more distant relative had just asked her, apparently quite certain of themselves, if she was the oldest of her siblings. Of course I knew full well that she was the baby of the six, but years of battling this terrible disease had left her looking a near generation older than she really was. I was shocked myself when I first laid eyes on her. Was this the fate my little one was destined for?
I remember my husband crying. I remember hearing – but at the same time not hearing – his conversations on the phone. First with his mom. Then his step-dad. Grandpa Mike, as we call him, the cardiologist. At that point, any direct connection to the medical community seemed like a life-line. I left him out there – talking to Mike. The truth is, he couldn’t handle being in the room. I remember the nurses commenting that it was better he wasn’t in there.
We had rushed off to the ER that morning in a state of frenzy. We had gone to sleep the night before thinking that the baby had caught his older brother’s stomach bug. But when I woke in those early morning hours, bathed in his urine, which had also soaked our sheets, I looked at his face, and knew something much worse than the flu was going on. In those pre-dawn shadows, I could just barely make out his features, but I sensed an eeriness to his face. His eyes were sunken, almost alien-like. It was the spookiest look I had ever seen.
By the time we got to the hospital, his blood glucose level was over 850[1] and he was in a severe state of DKA.[2] His veins had collapsed and the ER staff was having an impossible time gaining access to his bloodstream. The head nurse finally made the decision to tap the vein in his neck – there are no words that can touch what I felt at that moment. She said, “I’ll probably get in trouble for doing that, but if it had been my grandson, I would have done the same thing. You have a very sick little boy. I was just trying to save his life.”
I reassured her that I wasn’t angry; that I understood why she did it and thanked her for doing everything in her power to help him. Still today, when he gets angry or upset, his vein bulges in that place where that catheter was inserted – a vivid and frequent reminder of that day.
It was December thirteenth; Friday the thirteenth to be exact. In the suburbs of Chicago. I know the weather wasn’t great – winter in Chicago never is, but for the life of me, I can’t remember if it was snowing or not when we rode to the hospital in our car that morning or later during that long ride to Luries’s (the children’s hospital where we would spend the next week of our lives). I know that it was snowy or at least slushy in the city later that day because my husband left the hospital to go get cleaned up, and reported to me on the weather being a mess when he got back, but I just can’t remember seeing anything of the outdoors. All I can see when I look back on that first twenty-four hours is wires, and monitors, and my son’s eerily sunken look.
It took hours for the ambulance to arrive for our transport to the children’s hospital. In the meantime, we endured one procedure after the next. I remember at some point, my husband’s mother coming to pick up our second youngest. Being only four at the time, and not yet in full-time school, she had been carted off with us when we rushed to the hospital around seven that morning – the older two had been dropped off with neighbors so that they could go about their normal day. I can’t remember a word that was spoken between me and my mother-in-law. I just remember the tears and terror in her eyes. Honestly, I was just grateful that my four-year-old didn’t have to sit in a corner anymore, watching the horror unfold around her. I was grateful that I didn’t have to split myself between trying to comfort and reassure her, shell-shocked in a chair, and whisper reassurances in my now unconscious son’s ear. “Mommy’s here.”
I remember someone telling me, “If you had waited a few more hours to bring him in, he’d be dead.”
I remember them strapping him into the MRI bed and rolling him into the tunnel to check for brain damage. I like to remember that moment with him still unconscious, as if it didn’t bother him, but when I look at the photos I took that day, I’m reminded that he wasn’t. He was screaming. With straps on his arms, legs, and across his forehead, he was completely immobilized. The only things that could move were his eyes and his mouth. And as he screamed, he looked at me with shear terror. And there was nothing I could do.
I remember the ambulance arriving. I can’t for the life of me remember what the lead EMT looked like, or what she was wearing, but I remember her being the first source of calm. The ambulance crew had a little froggie hat with them. Someone put it on my son’s tiny head so he wouldn’t be cold when he transferred from the hospital to the ambulance. In that hat, his head seemed to shrink a little more.
My husband left. He went home to gather our things and make arrangements for the kids while I took the ride to our new temporary home. I told the EMT what I had been told – that they had never seen a case so bad, and that he was lucky to be alive. I remember her reassuring words – “I’ve seen much worse. And they’ve survived.” As she explained to me, it is incredibly rare to see an older person present with diabetes for the first time with numbers so high, but it is quite common in little ones. They can’t talk. They can’t tell you that they’re not feeling well, and that something feels really off. For the ER workers, who mostly work with adults, I guess this really was the worst case they had ever seen. For an EMT who works with young children and infants everyday, this unfortunately wasn’t.
Other than her reassurances that everything would be ok, I can’t remember anything of that ambulance ride, even though it lasted over an hour. At this point, memory seems to come in flashes – like from a dream. I feel like I remember some type of revolving floor that allowed the ambulance to turn around in a confined space. But was that real or something I’ve seen somewhere else before? I remember something of an elevator. Vaguely. Like there’s a memory trying to push through – the music, the lights, the kid-friendly characters painted on the walls. But maybe that was from later in the week from the countless trips I made up and down to the hospital cafeteria.
While I can’t clearly remember the transition to our room in the PIKU (Pediatric Intensive Care Unit), I do remember desperately wanting to nurse my son. Of all my children, he was the least interested in solid food, and nursing was still a big part of his nutrition and comfort. I wasn’t aloud to give him either. The best I could do was bend down into the plastic crib and put my cheek to his cheek. And cry. I remember such a swirl of emotions. Anger at the nurses for denying me the ability to care for my son the only way I knew how, and frustration with myself for not knowing how to mother him any other way. I remember someone saying that they would still give me the breastfeeding mom coupons that would allow me to get free food in the cafeteria – like that was some type of consolation prize. And then, determination. To show them that I was right and they were wrong. That I wouldn’t be forced to stop caring for my son the way I knew how. A year later – we’re still nursing.
We survived that first twenty-four hours and the week that followed; sharing that little room, crowded with wires, dirty clothes, and the clichéd but appropriate tension you could cut with a knife. At one point they almost threw my husband out because the two of us could not stop fighting over every little thing. They thought maybe it would be best to separate us. We told them we’d behave.
While we did our best to control our emotions, the tension built every hour that we came closer to release. My husband wasn’t sure that we were ready to care for him on our own. I couldn’t stand another minute looking at those walls. The nurses gave us their blessing and their reassurances that we’d be fine. Some days I still wonder if they were right.
[1] Normal ranges are somewhere around 100.
[2] DKA is short for Diabetic Ketoacidocis. According to the American Diabetes Association, “Diabetic ketoacidosis (DKA) is a serious condition that can lead to diabetic coma (passing out for a long time) or even death.” When cells don’t get the glucose they need for energy, the body begins to burn fat for energy, which produces ketones. – See more at: http://www.diabetes.org/living-with-diabetes/complications/ketoacidosis-dka.html#sthash.lUOZr3ZT.dpuf
