6.23.2017

hypoglycemia

"Don't worry about the worst case scenarios."

I was told this four times within the first three hours we had been in the emergency room with Carmen. Machines beeped and buzzed around us, kids cried in stereo and I was holding the body of a toddler unrecognizable as my own. Carmen never stops -- "she has no chill," her big brother will say -- but in the ER, she was laying still in my arms, drifting in and out of sleep. The doctor came in to either deliver results or calm me down. She dabbled in a little of both. I quickly identified myself as the mother of a child who lost one baby already to a fatal heart defect and immediately, everyone understood that I knew that worst case scenarios can and do happen. What no one else could understand was the pit in my stomach at the prospect of it happening again.

Around me were mothers who listened to the doctors orders about their child's febrile seizures or stomach viruses with clarity and understanding. In my daily life, I refer to these parents as naive. Not in a bad way, either. I was naive once and I miss it all of the time, especially during those times when my child is laying across my lap hooked up to machines and tubes and catheters. I miss the ability to not panic, to stay calm, to wait to see what the doctor says in order to find a treatment plan. Instead, where my second baby should be sits my ability to replace calmness with the sight of the room in a funeral home reserved for children-sized urns and coffins. The crowded room with the gray carpet and cheery fluffy teddy bears stuck upon the shelves next to ceramic baby blocks and angel wings, a short perimeter to walk while deciding which box should house your child's remains forever. "She's going to stay in the PICU," explains the doctor but not without sitting by my feet and staring me in the eyes in hopes to zap up a little bit of the devastation I'm screaming into the room. I feel numb and cold and then the cheerful endocrinologist walks in and everyone is giving me a speech about Nick Jonas being a diabetic, too, and look at him. Look at Nick Jonas? This is the best we can do for parents who are just told their child has a 90% chance of being diabetic but the official diagnosis will come in the morning, but don't panic, because Nick Jonas.

We are admitted to the PICU and this is when Carmen comes back to life, and by two a.m. they have to close her into the PICU crib like a cage. A kind nurse with a gentle spirit rocks Carmen for me so I can pee and splash my face with water and shovel a fistful of contraband -- Pringles -- into my mouth, thanks to a friend who made sure I was equipped to adequately eat my feelings in the hospital. The morning comes and diabetes is taken off the table. Thoughts of Nick Jonas in all of his glory have been replaced by a suggestion it may be epilepsy, and I am flung into a whole new world that has no celebrity spokesperson. "They even have dogs! Kids love dogs," offers a nurse trainee and I resist the urge to throw Carmen's entire breakfast tray at her face.

Moments later, they are strapping electrodes on my child's head to test for epilepsy. The doctor is cold and quick and won't answer my questions. I promise myself I will eat Doritos from the vending machine later if I don't google epilepsy. "She might not die from it, you know, there are safety precautions in place," says the doctor on his way out the door. She might not die from it, I think, is the new Nick Jonas.

The next day they take epilepsy off the table and the cold doctor is again replaced by the cheerful endocrinologist who believes it is ketocic hypoglycemia. It ends up being a correct diagnosis. We are moved from the PICU to the regular peds floor, which means Carmen can walk the halls and play in the playroom and I can have visitors. I never want the visitors to leave. "Get some sleep," my mom would say before she left and I would resist the urge to throw myself in front of the door and beg her to not leave me. "It's my son's birthday soon," I would tell the nurses as they came in, "we have to get home." Some nights her sugars were low, but not as low as they were the morning she couldn't wake up at home, and I'm told I'm going to be shown how to test her sugars at home. I can't even put my own earrings in because I'm too squeamish, so I prematurely just cry.

But then the time comes when she is able to be unhooked from her IV fluids for 24 hours without it affecting her sugars. We are given a feeding schedule from a dietitian, and the endocrinologist calls us in a glucometer. I practice the finger pricks on my husband and we are sent out into the world with a list of times to test her sugars at, all night long. All. Night. Long.

My husband and I haven't slept in two weeks and I think my body has just adapted to the sleeplessness. My phone alarm sounds at 2 a.m. and we roll out of bed, a routine in place, washing hands and waking up a baby that just wants to sleep. If her sugar is too low, we have the daunting task of feeding her until it rises -- yes, feeding the toddler who just wants to go back to sleep. Some nights this is easier than others. Some nights we are awake from 2 a.m. until 4 a.m. because she is just so confused as to if it's morning or not or why she's being forced to eat yogurt or drink a smoothie or juice. Once you let yourself fall back to sleep, it feels like seconds before the alarm sounds again. And repeat (and repeat and repeat).

She is doing well, and (not to jinx it) hasn't had an issue with low sugars for the past two days. We recheck with the endocrinologist on Monday. Life has morphed into normal, or a new version of it, one with scheduled snack breaks and blood sugar tests. I'm still trying to adapt and figure it all out, day by day, with lots and lots of coffee in hand. It's summertime, and we're soaking up the sunshine as best we can.



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