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September 23, 2017

Day #2 of IVIG #2


March 19, 2006 my son Mies had a "seizure-like event" that Children's neurology would never quite commit on. I was there for it and I'll go ahead and disagree. It was a seizure. It was a series of seizures. It was awful. Two days later I sat and held his hand and tried to comfort him as two nurses and a senior peds resident held him down while an intern performed a lumbar puncture on him to rule out various obscure infections like E. Equine and W. Equine encephalitis and more common ones like echovirus and influenza. They checked his blood for a bug called California lacrosse and  for things like measles, mumps, rubella. He had a CT and an MRI of his brain and a failed attempt at an EEG. He stayed in the hospital for three days, screaming continuously for most of it. Our roommate had drawn the short straw.


He'd had several seizures which resolved with Ativan in the ambulance (I'm told. I couldn't ride with my sweet scared Mies because I was home alone with his baby brother Max and we had to go by car). By the time I arrived at the ER, he didn't recognize me and had lost the ability to walk, talk or ever stand without falling over to one side. He was in a hospital crib flailing about, trying to get up and not being able to. He looked into the distance beyond me and it seemed like he was seeing something or someone. I hoped maybe my uncle, an ER nurse who'd once worked in Pittsburgh and was now passed away, was maybe there with him. He seemed to calm down. Go ahead and call me an hysterical autism mom for thinking that. I'll have some observations for you in return.


He was admitted and I sat by his crib for three days and nights. He couldn't have slept in there even if he was well because he and I coslept. They wouldn't allow me to sleep with him so he didn't sleep for three days straight (always good for a child trying to recover from an acute onset neurologic deterioration not to sleep of course. It's not as though sleep is vital for the body to heal itself. But hey, it wasn't safe for us to cosleep, right?)


We didn't sleep. I sat and watched my baby not recognize me and not able to function. Screaming and banging up against the metal hospital crib. What if he didn't recover? What if this was our new normal? I was set to take the MCATs in two weeks (the entrance exam for medical school). Would I be able to go if this was my Mies from now on?


When they came to take him in for his lumbar puncture, I asked what they were doing. They'd said they would do it under sedation because he had to be sedated for the MRI anyway. They told me, no, they would do the LP and then sedate him for the MRI. Compassion abounded. The issue, I knew, would not so much be the needle and catheter they would be putting into his back but rather the fact he needed to be still and would be held down. If you think about it, he didn't understand what was going down so it's as if someone were to kidnap you and hold you down and stab you in the back. You'd be upset too. You'd be traumatized. I certainly hope you would fight.


And he did.


The doctors asked if his dad and I would come in the room with him and told us we probably shouldn't because it would be upsetting. His dad declined and that's for the best (he almost fainted when I got my epidural with Max). I said I would go in, I wouldn't abandon my baby.


And so I sat holding his hand and telling him it would be okay as he cried and screamed and fought while the two nurses and one senior peds resident held him down and the intern directed the catheter between his vertebrae and collected the spinal fluid samples to test for both east and west equine encephalitis as well as echovirus and influenza. Afterwards they all congratulated the intern on what a good job he'd done under such difficult conditions. I don't recall them comforting Mies or me but I assume they did. It's the congratulations that stand out in my mind. It was the moment I thought "do I really want to be a doctor? Is this what I want to become?"


I'm glad the intern got it on the first try. I'm sorry I didn't fight them more on the sedation issue. Sorry I let me son get tapped by an intern for that matter. He lucked out.


It is quite the experience to sit and watch your child suffer that way. My Mies had been getting blood drawn from his tiny little arms on a regular basis since he was six days old. He never cried. Not once. I swear the needle was bigger than his arm.


He recovered his ability to walk and talk (they were surprised how normally functioning he was. Apparently when they'd taken his history repeatedly and I'd insisted his baseline was that essentially of a typical 21 month old other than some receptive language delays they hadn't believed me. Why believe an hysterical mom?) In the end they deemed it a seizure-like event followed by an adverse reaction to Ativan (it wasn't. But not knowing what happened never seems to bother pediatric specialists. Most anyway). We went home. We stopped off at Toys R Us and bought a train table and we went home and slept.


Such things traumatize you. I am not speaking metaphorically. It is trauma. No one tells you that. That you have PTSD from ra