When It Looks Like Your Kid Is Givin Up The Ghost

2016-08-09 10.24.21

So, today was a routine MRI to check for new brain cancer in John John. We have had so many debacles with the hospital. They classified him for general anesthesia only. Uh…..no….that is not happening. I fought for three weeks to get it acknowledged that he is indeed a candidate for the propOfol protocol at the Berger Center at CHOP. So, MRI scheduled for today.

Now, we have had emergent reactions to pentobarbital for a year now. I finally put my foot down and said never again. It was terrifying for me and for this poor kid. I have been punched, kicked, clawed to blood, and head butted during emergent reactions. They last an hour or more. It is an emotionally draining, physically daunting, horrific event that your child has no memory of. But, dear Lord, I do remember. Nothing like getting a shiner from your kid. He almost de-shirted a nurse. Hell, on a good day, like today….he ripped a nurse’s gloves to shreds because of fear over an iv. This kid has been through hell and back. I don’t have any other way to say it. It is trauma. He has been traumatized. From the age of 3, he has been in a world most adults can not cope with. He is scared. Of course he is. I am too.

I MRI alone. Steve thinks yelling accomplishes a lot. It does not. It makes John worse. I can at least calm him down when it’s just me. I know the ropes and how to set expectations and such.

Today was a new deep sedation protocol. It is the best around, the propOfol protocol. Minimal drugs. (one). Shorter recovery time. No more taking home a drunk kid. But…

The IV didn’t go well, even though he was prepped to the max. An hour after his scheduled scan, 6 people, including me had to hold him down to get the iv in. It was a moment I almost lost it.

Rule #1 : Never lose it in front of your child

So, IV in……I watch them hook up the more complicated IV lines than the normal set up. I ask the dosage of the propOfol. 40mg bolus. I am happy they rounded down. But, I did not realize that how fast they pushed it made a huge difference in reaction. I know the half-life of the drug is relatively short. I have even had it. But, not when I was 7.

Oh My Gosh. I am pretty sure they pushed it too fast. His back arched, his eyes became as large as saucers, and he whispered, “help me, help me, help me”. Dear Lord in heaven. I held him and spoke softly in his ear. I could only assume he felt as though he was falling. I whispered “mommy has you, you can’t fall out of my arms. You are safe and everything is ok.” And in 20 seconds he is unconscious and in the Berger Center, they are exiting you out of the room. I wanted to stay to watch him recover from the expected apnec pause after a bolus of sedation. Nope. Not allowed. I stayed. I held his head and pulled up his gown. I watched for him to breathe and when I was ok with his sedated state I left.

I just can not process beyond that right now. I did not get same day results like I did with Dr. Kang. In fact, we went to the clinic and Dr. Waanders told us it would take two or three days for results (calling bullshit). Dr. Kang always called us right away. The anxiety builds and builds.

Your mind wanders into the places it shouldn’t. Does the barometric pressure cause headaches in him? Does he need serial casting for the changes on his right side? I have given him Motrin 9 out of 17 days, is he having rebound headaches? Is he dying? Is his tumor back? Is this nothing except worry? Is his falling more often because he needs more physical therapy? Is he ok? Is he living or dying? Are the holistic treatments working? Am I giving him enough fresh squeezed juice and veggies? Do we need to beef up his supplements? Oh Dear Lord, you know my mind can go a million miles an hour.

When there is no direction, blazing a path can seem like an impossible thing. But, with God ALL things are possible.

I think next time, I will ask for his drugs to be pushed much much slower.

I am exhausted, Faith



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