Once little T got used to the placement and the backpack, he was playing and going from room to room. He had full awareness that he was “wired” and this was not normal. He did not forget and he was very sensitive.
He barely ate after the electrodes were placed. I know he was avoiding eating and drinking because he wanted to make minimal trips to the bathroom with the backpack. (And really? Who could blame him? Who knows where that backpack has been – it’s not like it was new when they gave it to him. I really doubt whether it had ever been washed – yuck!)
The muscle relaxant given to him earlier in the day, combined with his car nap home left him refreshed and still wide awake at 10:00 p.m. He finally settled down for bed around 11 p.m. This is when I got very nervous.
He had to sleep with the backpack next to him. The collection of wires had been bunched up and hung down just long enough that if he rolled wrong in the middle of the night he could choke himself. Both the hubs and I worried all night and kept checking him because he has a tendency to really roll back and forth in his sleep.
When he finally woke up in the morning, the gauze covering had come off completely. He did not lose any electrodes. They were, pretty much, cemented to his head. Waking, he was lethargic and not happy to have the backpack accompany him to the bathroom.
He knew that he would go back and return the “stickers”. He was nervous about this as he did not like Round 1. “Are you going to see the EEG tech today?” he asked.
He lasted for about 1.5 hours in ABA session before the therapist came in and told me he was not responding and he was calling the shift. Poor little guy was pre-occupied about his return trip. Luckily, we were scheduled to return everything at noon, a couple hours shy of the “24”.
When we arrived at the hospital, there was a different tech and the same tech – together. The new tech was bossy and unfeeling. She had lowered the gurney and told us he would have to lay down “this time”. Jessica, already upset by yesterday’s festivities, made it clear to her that he had been laying down yesterday as well. The bossy tech said, “Oh, did I do his placement? I did so many yesterday, I don’t remember.”
Immediately, the little guy started to fight. Bossy decided she would papoose him. She had the heavy, weighted velcro straight jacket under him already and just put him in lock down. He was absolutely beside himself with hysteria. His entire face turned bright red. The tears flowed and he yelled through his tears to get out. “Off!! Off! Take it off! Mommy take it off!!” “Jessica!! Say ‘hi’ to Jessica! Off, off!!” “Do you want the black Nissan?” “Let’s look at the black one! Black!” “Screwdriver!”
This went on for 30 minutes. I asked her how long it was going to take as I kissed and wiped away my son’s tears. She looked at me and did not respond. I asked again. She looked at me and said something that I do not even recall now but she never gave me an answer.
She put this solution all through his hair and on the electrodes to loosen the glue and scrubbed his scalp harshly. She pulled on his skin to yank off the electrodes and barely kept the solution out of his eyes. It was truly horrible. I am very angry about their complete lack of compassion and gentleness with my child. Basically? They gooped him up, didn’t talk and yanked those suckers pulling and lifting his skin for the return of their precious electrodes.
My little boy’s face was soooo red. He was like a little tomato. I felt horrible. Jessica felt horrible. She told me afterward it was killing her to see him so beside himself and be unable to do anything about it. We both felt helpless.
He was hysterical even after it was over and we were outside in the hospital lobby. In fact, he let loose with a good loud scream. I say, “Good for you, T!” They made all three of us so mad! It took a good 10 minutes for him to calm down and normalize.
At home, I gave him a regular bath with extra shampoo to the hair and did not notice anything out of the ordinary. When we got back to the bedroom and I was combing his hair, I saw there was a HUGE amount of glue still adhered to his scalp. As his hair dried, it looked like the worst case of dandruff, I’ve ever seen. He will need at least three more shampoos before that gunk is all out of his hair and all the green marker is gone.
I’m leaving him alone for now. He’s been through enough. I just hope this helps someone else get through it better prepared than we were.