A couple weekends ago when Gage had his extended EEG, I was asked to keep a log of his activities. Things like eating, drinking, brushing teeth and naps were noted with the specific date and time. I thought it might be interesting to also keep a log of my activities (and emotions) throughout those three days.
Friday, 2:00 pm – We got off to an easier than expected start. When the tech arrived to set everything up, Caleb took the perfectly timed nap, making it easier to focus on just Gage. I won’t sugar coat it, Gage HATED having all the electrodes hooked up and stuck down to his scalp, but on my lap letting out his screams, he got through it. I was reminded how much I hate watching my child suffer while I’m helpless to do anything to comfort him. When Gage was little, he used to have to get blood drawn every two weeks to check levels and make sure the anti-viral meds he was taking weren’t having negative side effects. It was always hard to get enough for a sample, and watching the nurses make several attempts was BRUTAL! Recently, Gage went to the dentist, and again, holding him down while he gets his teeth cleaned was like torture! But the great thing about Gage is how quickly he bounces back. Before the tech left our house, he was sharing his sweet smile again.
3:30 pm – Evan hadn’t arrived home from work yet, and Caleb was no longer napping. I found myself constantly worried that Caleb would tip over some of the equipment (there were 2 cameras set up in the house to watch Gage’s movement) or rip something off Gage’s head. I was trying to keep Gage comfortable, while also trying to keep doors shut and a close eye on Caleb. With each moment that passed, I wished more and more that Evan was there. In anticipation of a long weekend, I felt like I was on the verge of tears.
4:30 pm – My wishes came true and my love returned home from work. In the wonderful way he does, he recognized my need for a break and suggested I go get pizza for dinner. Caleb tagged along to go pick it up. Gage was super upset, and I can’t blame him. I’m sure his head was itchy and uncomfortable, and he was tethered to a monitor that I kept awkwardly trying to position and keep untangled.
6:00 pm – We returned home to a much happier Gage – sometimes a little break makes a big difference! After a quick bite to eat, Caleb and Evan headed out to the races. It was OTC night at the drag strip and Caleb was excited for his first racing experience! Evan even got to drive. It was nice to just have some quiet time with just Gage. He was still unhappy and uncomfortable, but still flashed his gorgeous smile for the camera when Daddy requested a picture to show his co-workers at the races. We cozied up on the couch and I felt much less like crying.
The monitor that all the electrodes were hooked up to is what’s sitting in Gage’s lap. It was much more compact than I was imagining, and could ride in the pocket on the back of his wheelchair. There was also a button that we were instructed to push if we noticed any strange activity.
8:30 pm – Gage gets a story and heads to bed. I let him cry it out for a while, which isn’t out of the ordinay for us, but I’m more concerned than usual thinking about the extra wires, etc. in bed with him tonight. I keep a close eye on the baby monitor. By now, Caleb is all raced out and Evan calls to tell me they’re heading home. I assume Gage will still be up crying when they arrive, but luckily I’m wrong. By the time Evan carries a sleeping Caleb inside, Gage has also fallen asleep.
11:00 pm – It’s my own bed time and I find myself lying in bed closely, even obsessively, watching the monitor.
Saturday, 12:00 am – I’m still awake, hyper aware of the small movements and sounds coming from Gage in bed.
1:00 am – Slept some, but back awake…was that a twitch from Gage?
2:00 am – Awake again
4:30 am – Awake and suddenly alert to sounds from the monitor. Hurry to Gage’s room and find him grinding his teeth repeatedly with distressed cries mixed in. Push the button to indicate seizure activity and try to soothe Gage, rubbing his back and telling him over and over I’m there. Try to commit details to memory to later record on the log.
5:00 am – I’ve moved Gage to the love seat in the living room so I can change his extra slobbery sheets. I debate putting him back in bed on the fresh set, but decide to let him sleep peacefully in the living room instead. I take my spot on the couch next to him and resolve that I’m awake for the day. Turns out, I was wrong, and I actually get a few more hours of sleep before the rest of the house is up and day 2 begins.
9:00 am – Caleb discovers the alert button on Gage’s pack and pushes it. It was bound to happen sometime.
10 am – One of the electrodes has come off and I make a sorry attempt to reattach it. On the phone with the company monitoring things in Texas, I’m able to confirm when it’s back on and reading things again, but it would continue to detach throughout the rest of the weekend.
Gage was in a much better mood throughout Saturday. We went about our day pretty normally for the most part. As often happens, throughout the weekend, we were overwhelmed by kindness from our friends and family. So many people reached out to offer help, whether it was making us meals, taking Caleb off our hands or running errands. Close friends and family were checking up on us, as were former preschool teachers and therapists. Things like this are welcome reminders that we’re not alone, even when we’re stuck at home for a weekend.
Sunday, 12:30 am – Another episode pulls me out of bed and has me rushing into Gage’s room in the middle of the night. This time, he has vomited everywhere. He drank a berry Pediasure shake before bed, so pink puke is covering one side of his face, in his gorgeous eye lashes and staining the white gauze of this head wrap. There’s more than just vomit going on, and Gage works through another spell of teeth grinding and discomfort. Another button push on the monitor. Evan helps as we strip sheets for a second night in a row and I do my best to cut away the pink gauze and replace it and re-stick electrodes on Gage’s forehead.
By the grace of God, the rest of the night is uneventful. I have such mixed emotions about the things going on, because of course I never want to watch Gage suffer through a seizure, but at the same time I wanted to get information about exactly that type of activity while having this test. One of my fears going into it was that nothing would happen while he was hooked up, but would right before or right after that weekend. I’m glad that wasn’t the case.
Sunday was another “normal” day and we were all glad that things are winding down. Before bedtime when Caleb would get a bath, we’d sneak back to our room and so he could use the tub in the master bath so Gage wouldn’t get jealous. Only sponge baths for him for those three days. I knew if he heard the water running and the tub filling up, he wouldn’t be able to contain his excitement. That kid LOVES bath time.
Luckily, there were no out of the ordinary events Sunday night. My biggest moment of panic was when I was when I accidentally tipped over the camera tripod in the bedroom! I was so worried about Caleb damaging the equipment and it was my own clumsiness that caused any issues. A quick phone call confirmed everything was ok and we were still up and recording.
By the time Monday afternoon rolled around, we were ready to be done. I’m sure Gage most of all. Getting all the things on his head unstuck was pretty awful, but again, we got through it and he was smiling again in no time. And again, Caleb took a perfectly timed nap and let us focus on Gage. Gage got a much deserved bath to wash all the goo out of his hair before we headed out the door for feeding therapy that afternoon. 
And just like that, another week was underway. My trooper Gage was back in the swing of things in no time, just rolling with the punches like he always does. I’m so anxious to find out more from the study, but we’re still waiting on results. When I called to check yesterday, they said it can take a couple weeks and Gage’s neurologist is out of town this week. I’ll share more as we know more. If you’ve made it through the end of this long post, you’re probably at least somewhat interested. 😉 We’re so grateful for all the prayers, support and offers of help. Our journey isn’t always easy, but the people around us make it so much better, just by being there.