We left home at 5:00 am on Monday and drove to Texoma Medical Center. We were ready.
Goal: Quickly wean Everett of his anti-seizure medication and check on seizure activity. As of his last EEG, a year ago, he was having, on average, 50 "absent" seizures a day. Prior to medication, he had several grand mal seizures, whenever overly tired or sick.
Hopeful Outcome: Since he has been seizure free for a year, we are hoping the EEG shows no seizure activity, which will result in no more medication.
This is the view from our window on the pediatric floor. s.w.e.e.t. Poor babies can't even see nature being all cooped up.
Evy is ready and surrounded by love. In this picture alone, the red blanket and pillow (and a book you can't see) were given to Evy to wish him luck. Both the pillow and the blanket were handmade and he was so excited to receive them from the hospital staff.
This was our activity "bank." It had several purposes: help Everett become excited about going to the hospital when we made it, remind Sheila of what to do when we got there, help Everett visually pick out the next part of our adventure. And, it worked REALLY well! (I packed tons of games, books, movies, lots of art materials, puzzles, cars, experiments, and several gifts for him to open.)
Note: It is tempting to just let the kid watch shows, right? Well, there are drawback to that besides the obvious that it doesn't do anyone good to watch TV 24 hours. We needed seizure activity checking. I needed him to be doing things so that I could see if he was having a seizure. If you have absent seizures and you are watching TV, you CAN'T tell! I wanted him doing his normal activities in case there was something in particular that triggered his seizures, and who wants to wean a TV addict kid once he gets home from the hospital? not. me.
It didn't take long being attached to the wires for Everett to start calling himself Robot Man with the Robot Box (battery/computer for the EEG machine).
Here is the video EEG monitor. And Everett. And the wiring, like 26 wires. Taped heart monitor-wire-thingy on his chest (he hated that one). There was the security monitor on his ankle and then his ID bracelet ("Can't I JUST CUT IT OFF?!") And, his FIRST present of the day (Thank you, Aunt Mandy, Preston and Riley!).
I don't remember.
The staff at the hospital was just great. The only times that were tense were during blood-draw (duh!), gluing the wiring, and removing the wiring. They were great at clearing up any miscommunication from the doctor. We were really lucky!
He charmed the nurses. At the beginning of each shift, the nurse assigned to Evy would run in to say that she got "lucky because Evy is every one's favorite patient." Evy would have long conversations with the housecleaning staff, and whenever food services delivered the food he would exclaim,"I LOVE your food!"
One morning, the housekeeper came in and started taking out the trash and linen.
He introduced himself,"Hi, my name is Everett."
She paused,"Hi, I'm Sally."
He replied,"Oh, there is a car on the show Cars named Sally."
She stopped again and said,"Oh, I didn't even know that. I learned something today."
A few minutes later, he asked,"What are you doing?"
She replied with,"Cleaning up the room. It is my job."
Evy watched her a little longer and said,"Do you do this every day?"
"Yes."
Evy then asked,"Don't you get bored?"
To which she BUSTED up laughing and said,"yes."
A few minutes later she was mopping and he exclaimed,"You mop WEALLY (really) FAST!"
Playing fishing.
I love the look of concentration. Erik has this same look when he is concentrating.
Another present, Spiderman Socks!
I AM ROBOT MAN doing the robot.
This was the beginning of our first experiment: Everett's Airplane Experiment. We were testing several flying objects to see which went the furthest. We gathered the materials a couple of days ahead, got Evy excited about the project, and then went with it on Monday. (PS, you can see his Magic Cape in the upper left of the picture (Awesome, Aunt Elise!))
Dad came that evening for a couple of hours and was key in the experiment actualization.
The Data
The "Robot Box" that Erik is holding for Everett is the battery to the EEG machine. It was an ambulatory machine, but, there really wasn't anywhere to go. There was a playroom, but the unit was occupied by sick children as well as kids getting EEGs done. So, we weren't too motivated to spend much time there. OK, back to the experiment.
The Winner: Foam Rocket
Highlight of another experiment--we used those "sponge dinos" in a capsule and wondered if hot or cold water would make the covering dissolve faster.
Evy's guess was HOT.
He was right! (okay, we did a lot of these types of experiments and even though they weren't elaborate, they were cheap, kept our attention, and were fun to do . . . take a look at the food. The burnt pizza was an anomaly. Everett basically loved the food.)
Trying to take care of the itches.
By Day 3, I was working it . . . origami. "look at the cool cup that we made and put our snack in!"
Greek God inspired decorations compliments of Cousin Preston (and they were much better than the icky floral print).
One of the best things that I brought: Painter's tape. We made roads, used the tape to hang stuff, used the tape to "capture and wrap evil cars." Next time, I need to bring paperclips and yarn as well.
After 3 days and 2 nights hooked up to wires, confined to a bed, and dragging a Robot Box to the bathroom, Evy was given the green light to go home. The doctor had the information that he needed.
Bath time! After the EEG technician poured the solution to "dissolve" the glue, he took a bath.
There was quite a lot, I mean, quite a lot of glue left even after the five hair washings. You can see some of it here on his forehead.
Freedom Dance!
When we arrived home, a "Brave Guy Trophy" full of Cheetos was ready for him. He has been asking for months how he can "get a trophy" and we found a way to end all this on a high note.
Left over glue.
During all this, Merritt stayed with friends each morning. Erik would bring him home to nap and then Merritt would visit another friend in the evening to allow Erik to come visit Evy giving Sheila a break for a bit. Erik would pick up Merritt in the late evening and start all over the next day. In all, it was the best structure we could come up with since the hospital was an hour away from home. The unknown in all this was that the car that Erik was driving needed a new transmission. Each time he drove the distance, we all prayed that he would make it without the engine falling out of the car.
On Wednesday, we celebrated with slides and hamburgers and then chicken. We were all glad to be reunited. I was ready to spend some time with Merritt. Our first night back was the pits. Evy was used to someone sleeping in his room. All of our sleeping schedules were out of whack. At the hospital, the nurse comes in to check vitals every four hours during the night. Yeah, that wakes you up.
Most of the glue is out now. Over 20 washings. Conditioner and a soft bristle brush and a dad named Erik were the biggest reasons why Evy is almost glue free.
In the end, Evy is on a different medication that is safer to take. It will prevent seizures and allow his brain to continue to heal. We will continue to do bloodwork every three months. We'll be back for another EEG in 6 months to determine progress. In all, his seizures decreased by 90% in one year. It is rare for someone to be diagnosed with "absent" seizures as young as he was. At the same time, it allowed us to get access to the care that he needs so that when he starts school those issues are minimized or (cross your fingers) gone altogether. We feel very blessed and lucky!
So many people helped us. Evy was given care packages, prayers, messages, and calls at the hospital. Several friends helped very willingly with Merritt.
For me, the week was exhausting. All of my energy and focus were spent on keeping Evy happy and occupied. Whenever Erik would come to relieve me for a couple of hours, I just wanted to crawl into a comfy hole and sleep. Instead, I would leave, get a quick bite to eat, and roam a store or two. The particle board I slept on was incredibly awful. One dad said that his bunk in Iraq was more comfortable. Each time I turned my aching body over, trying to sleep, ignoring the shooting pains in my back and hips, I was so grateful that I knew this was a short day. I am grateful for healthy children. I am grateful to have children that don't need continual hospitalization. I feel very blessed.
My allergies were raging lunatics during this time. I felt pretty bad. One night, I opened my eyes and saw Evy, in sillouette--the lights from the machine outlining him in the dark, in front of me, he had his Robot Box slung over his shoulder and was reaching out to put his hand on my forehead.
"Mom, where is that computer temperature thing for your forehead?"
"It is at home, Evy."
"Mom, I need it to check and see how sick you are." And then he rubbed my face and padded my arm and told me he hoped I felt better soon.
"Can I get you sumthin', Mom?"
"No, thank you. I'll be okay."
"Okay, night-night." And he walked with his Robot Box over his shoulder to his bed, gently placed the box down, pulled his silky blankie over him and said,"I wuv you."
That is our Evy!
