My husband was on a flight, headed back to Denver, where he would be directly dropped off at Children's Hospital. What he didn't know while he was 35,000 feet in the air was the hell that was ensuing on the 8th floor for our family.
The night before my one year-old was denied water for over seven hours in order to diagnose, his AVP-D. He screamed and cried and moaned for the duration of this time while we did everything we possibly could to distract him… But what we didn't understand was that he was going to have to start that process all over again in order to get his MRI. Just when we thought we had made it through the worst hell possible – it got worse.
NPO - NOTHING PER ORAL
This is the worst curse word I could possibly think of when it comes to my baby boy's situation.
You see – before you undergo anesthesia for a procedure you have to go without food or water for a certain amount of time in order for you to remain safe. NPO for most people is annoying at worst…
But for an 18 month old baby, who thought he was being tortured to death just hours before – we were getting ready for some thing we could have never ever imagined. We were going to have to start restricting water in order to prepare for the procedure, starting everything all over again – engraving a fear into his brain that may never leave him.
The only way I can try to describe it is like this:
Imagine playing with someone that you love in a swim pool… Your spouse, your mother, your grown child. And then they grab your head and they push you under water. You start to struggle. You don't know why this is happening. You're screaming out but they just hold you there. Fear flows through every ounce of your body.
You think you are going to die.
Then they let you come up only to take a couple gasps of air and then they do it again.
This continues for seven hours while your vitals are monitored just enough to keep you alive.
And finally they let you come up for air and you cry tears of fear and relief… But just hours later, after you finally feel the slightest bit of comfort, you look back at that person you love and trust, who instantly throws you back into the pool and starts the same process all over and you don't know what's happening or if you will survive.
NPO IS PURE HELL FOR THIS CHILD.
I don't think I would remember the next three hours if it wasn't for my Vlogs that were bringing me some sort of sense of sanity. My husband returned, and we embraced in tears… quickly after we were separated because only one person could accompany our baby to his procedure. They wheeled Whitten John and I down the hallway - all of us crying.
While I had deeply feared anesthesia before, watching my baby slip into a peaceful state, brought some sense of relief after another 90 minutes of holding my baby in my arms, confined to the waiting area before the procedure, as he screamed "daddy daddy daddy!"
I zombie walked myself back to the lobby and pulled out every coping mechanism I've ever known. I journaled, I attempted to get some healthy nutrition, I meditated, and I prayed. Boy did I pray. I looked around the room and said thank you for every possible thing I could, and I tried to settle into a state of trust. TRIED.
They don't really call your name in the waiting room at Children's Hospital… They just know who you are. They're able to look over and see your exhaustion and fear and come directly to you. "Whitten John is awake and ready to see you."
This time we were both allowed to go back into the post op room together. This was the first of many times we would turn that corner and see his tiny body in the big hospital bed and watch him come out of anesthesia with tubes and stickers stuck all over his body. He looked so small, so meek, so weak. He had been 27 pounds one month ago and there he lay just over 24 pounds, dark circles under his eyes and this aura of sadness around him.
They wheeled us as a family back up to the eighth floor and as we opened our door my heart sank in the anticipation of the unknown.
There stood our general physician, an oncologist, a neurologist, an endocrinologist, and a neurosurgeon.