As I drove my daughter to the airport at 3:30am this morning, my mind aimlessly wandered back to 365 days ago.
At this exact time we had been completing my one year olds, water deprivation test at Children's Hospital Denver. My heart felt so much relief that the completely torturous procedure was finished. The catheter had been removed, and he took in his first drink of water.
It was like someone taking their first breath after minutes without oxygen.
He cried as he drank, and we celebrated as his body returned to life. One minute later I was covered in vomit, because he waterlogged himself unable to absorb the 12 ounces he just took in within 30 seconds. But we filled another bottle and he continued to drink, attempting to return back to his safe state.
My son was diagnosed with an incurable, extremely rare disease, that only affects approximately 835 infants in the United States in total. Arginine Vasopressin Deficiency (AVP-D) previously known as Diabetes Insipidus (DI) is a disease where his body is unable to produce the hormone that stops him from urinating - making it impossible to survive without a fake hormone.
My mother and I celebrated in our naivety; just thankful that the treacherous exam was complete. My perception:
Teach us how to manage the disease and what pills he takes and let's be on our way!
I quickly snuck out to grab a quick cup of coffee, my body needing the caffeine after pulling an all nighter, where we were unable to drink anything…(If my son so much as laid eyes on a cup, it would exasperate his dehydration and pain... little did I know, hiding cups would be something we did for months to follow)
I took a deep breath and was about to return to our hospital room when a doctor approached me just outside.
"You understand your son has Central Diabetes Insipidus? Do you know what that means?"
"Yes", I said. "He's gonna have to take some sort of pill."
The dock took a deep breath and said "Do you know what causes this?"
I had done a little research and had a conversation with a couple nurses and said, "Well, it could be genetic or from hitting his head maybe...or..."
He looked at me with calm, sad eyes as he acknowledged my lack of understanding. I stared at him blankly.
Central Diabetes Insipidus is caused by a lesion on the brain.
Did you know that 'lesion' is just a fancy word for tumor? I guess it's supposed to make people feel better… Which it did in the moment, but when I went to the lobby and plopped on a bench, my body became numb, as I started to realize the gravity of the situation.
It was now 4:30am, 3:30 California time and I dialed my husband .
Sobbing on my end until finally:
You need to come home. They found some thing on his brain. Our baby boy has a tumor in his head.
Sobbing on both ends.
Within 30 minutes he had an emergency flight home so that he would be there while our son would undergo the first of many MRIs to come.
Shaking, I returned to the hospital room, eyes even puffier than before and saw my baby sleeping quietly. My mom was staring off in utter fatigue and shock, and I took another deep breath, knowing that I had to share the news with her next.
Grasping for every ounce of strength I had, I sat next to her and started sharing the news that would forever change all of our lives.
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