We finally were able to complete the 24 hour EEG yesterday …finally! If you recall my first post in Part 1 we were supposed to have this done almost a month ago but the original hospital didn’t have any beds available for us. We rescheduled with a different hospital for yesterday and now I’m able to breathe a sigh of relief that it is over.
Going into the day, I was worried about how they were planning to put all those electrodes onto my son’s head and also how we were supposed to keep them on his head for a full day. In case you’re wondering the same thing too here is what happens…
The technician sat behind my son and began placing the electrodes on the back of his head where he couldn’t see him. I held his hands and my husband played some nursery rhymes on his cell phone to keep him occupied. A few times he tried to pull his hands away but for the most part was pretty engrossed in the video on the phone. The electrodes on the forehead proved to be a bit more difficult but the technician was pretty quick and obviously skilled at working with small children. Each electrode had a colored wire that connected into a control box. It reminded me of the input/output of a television set times 20.
Once all the electrodes were placed, the technician wrapped gauze around and around and around my son’s head, forming a helmet. He then took surgical tape and taped and taped and taped over and across back and forth. That sucker wasn’t moving! He then scooped up all the wires, taped them all together in a bunch, and placed the control box into a little “backpack” which had a strap for my son to wear across his shoulders. In addition to the black backpack, he also had a cord that connected the box to the electrical source. We had to constantly make sure he wasn’t getting tripped up in the cords. Too bad it wasn’t on WIFI , haha.
From there on, we were on our own. We had one visit by an Epilepsy RN to get a little history of Thomas. We then had a visit from a volunteer to see if we needed anything and other than that, we were alone for a full day in one small room(minus the delivery of our meals of course). Yikes.
My son is usually limited on how much TV he can watch as we try to play and keep his mind moving but considering the situation we decided to just leave Disney JR. on the entire time he was awake. Thank goodness there was a TV in the room…his toys could only occupy him so much for that long.
Naptime was…interesting. We tried putting him in the crib they supplied but considering we were all stuck in one little room, he wouldn’t go to sleep and just stood there screaming. Since we were literally 10 feet away it was pretty hard to ignore. We took him out of his crib and the three of us laid down on the play mat they gave us for the floor. FINALLY after about an hour, he fell asleep. Doesn’t he look so little laying next to my husband?
Unfortunately, shortly after I snapped this photo there came a knock on the door. Maintenance was coming in to change the garbage. I tried quietly shoo’ing him away but it was too late and my son started screaming. We tried to calm him down and get him back down to sleep but he was not having it. The EEG machine was running where we could see and watch it and we noticed that it registered “Seizure activity” somewhere around that time so we’re hopeful that it was just a glitch of the system from him being so upset.
Nighttime came and was also …interesting. He was exhausted so there was no way we were keeping him awake any longer than his normal bedtime. Plus, my husband was driving back home since the room wasn’t set up for more than one adult to stay. So 7pm, I rocked him for a few minutes and sang our usual bedtime songs and put him in the hospital crib with a special “Olaf” doll we got him at the gift store (forgot his loveys at home!). He immediately stood up and started shaking the crib and screaming. We lean more towards the cry it out method but I felt so bad for my sweet boy that I kept going over to him in the crib and rubbing his head, trying to get him to lay back down. Eventually I realized that, like at naptime, he can see me and knows that if I’m not sleeping he doesn’t want to sleep either. I turned all the lights off and sat in the dark until he finally fell asleep….at 9pm!!! After playing on my phone for a bit, I eventually went to sleep myself.
Thankfully he slept all night and didn’t pull any of the electrodes out of place while sleeping. The nurse woke us up at 5am, we got all his electrodes taken off and were able to head home! No one was more happy about that than Thomas!
Now that we have completed a 24 hour EEG, I have some tips that I can share with other parents who may be coming up on this procedure as well.
1)If you see, Thomas has a zip up hooded sweatshirt on? I brought this so he wouldn’t be cold but it ended up quite useful because he wasn’t able to pull on the strap for his backpack!
2) Dress your child in button down or snap together outfits. Once the electrodes are on, you can’t pull anything over the head. We were told to wear something comfortable since he would be in it for the whole test. However, if he ended up spilling something on himself I didn’t even think that he’d have to sit in those clothes like that!
3) Leading in…. bring a change of clothes! We had nothing with us. Thankfully we didn’t need anything but we would have been in trouble if we did.
4) Don’t forget to bring special loveys or blankets from home. For your child and yourself (blankets…not loveys…) because the ones the hospital provide are not comfortable OR warm. You want your child to feel like they’re at home as much as possible.
5) Bring lots of snacks for everyone!
6) Depending on how your child reacts to new places this may or may not be helpful. When we first arrived they had a bed in the room but I requested to get a crib instead. In hindsight, I wish they kept the bed so I could have slept with Thomas. He doesn’t ever sleep in our bed, but in this situation I think he would have felt a lot more comfortable, and gone to sleep a lot quicker, had he been next to me.
Hopefully this will help some parents out there. I know when I was trying to research this test I couldn’t find a lot of information from a parent’s perspective.