Monday, December 19, 2011

On Believing....Part 2

Shortly after the MRI with contrast was read, we were informed the Brevin was being admitted to the Pediatric Intensive Care Unit (PICU). Now things start to get fuzzy in my mind. I know that we were told he was being admitted. I know that I processed the term PICU. I don't remember the ER staff telling us a diagnosis. I know that we grabbed our stuff and headed up the elevators.
Now Les and my kids were all back at Smokewood (Grandma's House). They would remain there for 5 or 6 days. The whole time Liam was running a fever at night and had a terrible cough. I knew my kids were in great hands though, so I could just focus on Brevin and Melissa.
They allowed me to ride up the patient elevator with Melissa and Brevin. My parents, our cousin Sarah and our Aunt Nonnie all rode up on the regular elevator. The plan was to settle Brev into his room and then I would go get them and we would all be there for the Doctor's first visit.

Well, the Doctor and his team came in pretty fast to see Brev. Report from the ER staff was given right there at the bedside, then the ER staff went back to ER. Now we were left with the people that would be our go to team. They stood near the bed discussing medical plans in whispered tones. I did hear this term that sounded like "Adam" and I wondered if Adam was a certain person or what.
Then it was time for the Big Guy to come and talk with us, the two extremely frightened and stressed women hovering over Brevin. Now let me say that at this time we were completely freaked out because during the 6 hours in ER, we had seen an even further decline in Brev's abilities to communicate with us and he felt like he was a million miles away.
Dr. Mike heads over and starts talking with us. We hear words like meningitis, encephalitis and then this one word he says again "Adam". I am a bit perplexed and I stand there like a tree and quiver. Then he says, "A-D-E-M". ADEM. Then he says, "Acute Disseminated Encephalomyelitis". We hold our breath as we wait for him to answer us when we ask what that is. At that time, all that I heard was, "myelin in the brain being eaten away", "nerve impulses can't get through", "brain swelling", "possible further loss of function". Then I ask about recovery and all I heard was "I don't know...." . Now, weeks later, I can assume that Dr. Mike said something after that. Something medical about percentages and each brain being different. But I heard "I don't know..." and I fell into a deep, dark pit. I tried to go and tell my parents what was happening and I tried to be cool. I was not. I just...wasn't.
Later, pretty quickly, in fact we would get more information. But there was a short time there when I felt abandoned of all hope and good things. I felt utterly alone. I could not believe that this was happening. I kept thinking that I would wake up. I looked at my sister and I had to look away. I would look at Brevin and my heart would shatter. I started praying in those moments and I prayed continually for days and weeks on end. A prayer with each breath, with each heartbeat, each thought.

We learned a bit more about Brevin's situation. It was going to be between two diagnosis- the ADEM or Encephalitis. The fluids they would take out of his spinal column would tell us which it was- until they knew for sure though, the plan was to treat for both.
ADEM is essentially an autoimmune response that tkes place after a primary infection. So he got sick and his immune system kicked in and when the virus or bacteria was gone- his immune system just didn't turn off and his own body was eating away that lining of his nerve cells in his brain and spinal cord. (We assumed his spinal cord was being affected because of a few of his symptoms, though the original MRI with contrast was brain only).
Encephalitis is in and of itself a primary infection. He got an infection and it went to work on his brain, again, eating away at the lining.
Only time would tell us what we were dealing with for sure.

By the next morning we had a child that had lost all ability to speak or swallow, he had no independent movement of his trunk or limbs. No control over body functions. He could blink his eyes and kind of move his head. That was it.

He faded away from us. Like a star blinking out. In just a few hours we were without one of the most precious things we have known. There isn't really a word big enough or dark enough to explain what it feels like to see a child you love simply go dark. I hope I never again in my life have the chance to feel that way. We would live for 3 or 4 days like that. Nothing to hold onto. No good news. Just this grind of one minute followed by the next and no Brevin there.
We only had a few phrases form medical literature to hold onto. ADEM patients recover very well- 80% recover with no long term defects. Encepalitis patients do recover and regain function. But it was all ambiguous. The Neuro Doctor would say, "Brevin will tell us, we have to wait and see". We were told that he would lay there in that bed for two weeks before we saw any improvement.

And so we waited.
And we prayed.
And my sister and I held his little body down as they poked him and prodded him. There were central lines placed. There were spinal taps, feeding tubes, peripheral iv's. EEG's. X-rays. Neuro checks. Blood draws. Antibiotics. Steroids. Lots and lots of steroids.
And we waited.
And we prayed.
We slept very little.
Ate even less.
My sister would NOT leave his side.

One night he started grinding his teeth. That can be a sign of seizure activity. So we added some anti-seizure meds into his regime.
And we waited.
And we prayed.
My sister would look at me and in her eyes I could see her questioning her son's future. And I would say, "He will be fine. He will recover. We will get him back" And then I would turn away and pray over and over again , "Please don't make me a liar. Please don't make this a lie". And I would turn back and we would bend over that bed and care for Brev. Then we would sit and stare.
Every night when my sister thought I was asleep, she would crawl into that bed, wending her way through all of the lines and tubes. She would curl her body around her son and she would weep as silently as she could. And I would lay there 2 feet away and make demands of a God that I haven't spoken to in a long while. I was helpless in my humanity. I was lost as an Aunt. I was a broken hearted sister.

Then, one morning Brevin opened his eyes and freaked out. I mean he kind of lost it a bit. There would be worse fits to come thanks to the steroids, but I believe this episode was what I had been praying for. Because he was afraid. He was with it enough to know that he wasn't at home, that the stuff on his body could not mean good things. I had to yell at the nurse to turn on a light and I will confess to not being all that nice about it. But the minute Brev saw Melissa's face clearly he backed down and we were able to talk to him a bit about what was happening. I knew then and there that if he could nearly sit straight up and start yanking things that we were probably going to be ok. I knew that if he was there enough to know that he should be afraid that we were going to have him back.

There would be more hard times. But I would hang on to the look on his face when he saw his Mommy. I would remember that I asked God for a sign and he freaked out. I'll take it,  I wasn't in the position to be too picky.


  1. Oh, poor kid. *hugs to all* My thoughts are with you.

  2. Oh, poor kid. *hugs to all* My thoughts are with you.