All Things Mommy, Medical Mumbo Jumbo, Uncategorized

How to Prepare Your Child (and yourself!) for a 24 hour EEG – Part 2!

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?
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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.

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23 Comments

  1. Elizabeth

    Very informative. Your poor little guy! That can’t have been a fun day. Glad it’s over for all of you.

  2. bettybrico

    Wow this sounds like an ordeal. My older daughter had to do a sleep study but because I was breastfeeding the younger so my husband stayed overnight. He said it was quite difficult and the electrodes kept falling off…did not sound like a good time. I hope you get helpful results at the very least from the ordeal!

    1. They said they were surprised the electrodes stayed on apparently it’s more common to fall off than stay on!

  3. He is so adorable. I’m so sorry you all had to go through that. This is so informative for other parents. Thank you for sharing!

  4. We're the Joneses

    Oh I can’t imagine! I know any one of my kids would be going nuts if they were stuck in a little room all day and night plus not ripping off those electrodes! You’re super mama!!
    Merichelle | http://werethejoneses.com

  5. I’m so glad this worked out for you. It always helps when the hospital knows how to handle small children. These are great tips! I hope you guys get results soon and everything is okay.

  6. Oh that must have been hard for everyone. Thank you for writing such a detailed post. There needs to be more of these around. Good luck to you and your family moving forward xx

  7. This is such great information for parents! Doctor visits and procedures are some of the hardest things for families to go through. Thank you for sharing your story!

  8. I can understand how much stress you would have felt those 24 hours. It’s really hard both physically and mentally when your kid has to undergo such medical interventions. Happy for you it went well without much issues. Your detailed writing will be certainly helpful for many parents. Thanks!

  9. So sorry you had to go through that, but thanks for sharing! My son had to visit the cardiologist for echos when he was younger a few times and it was a similar process. We have to go again just as a precaution but thank God things are great now! So scary when your kid is sick..

  10. Your poor little guy =( I used to work in a hospital before I had my baby and it was hard enough to deal with adults and these types of tests so I commend you for keeping your little guy comfortable and (for the most part) happy!

  11. I can’t imagine having to go through this! but you have some really good information here, I’m sure this will help those who will be

  12. Lu

    Awesome post, very informative. Thanks for taking the time to write out these helpful hints 🙂

  13. Wow, what an experience. It sounded so hard being in the hospital all that long, especially for little thomas. Hospital’s aren’t fun with tv or food service. Thank you for sharing this though. I think it’s so important for other people to have something like this available for them, if they needed some kind of comfort that other’s have gone through it before. I hope everything keeps positive moving forward. take care!

  14. Sorry you and your family had to go through this, but thank you for sharing yours story with the rest of us. Glad its over and done with!

  15. So informative! As a nurse, it is so nice to see the other side of it. So glad he got through it okay. You are an amazing mom!

  16. this is such great information to know. in medical procedures and situations like this, i feel like it is SOOOO much worse for the parents than it is for the kids.

  17. Lisa

    We have been there before (twice). These are great tips.

  18. Snacks, extra clothes, all essentials! And the one time I forget something is the time that I need it!

  19. Oh man, I can’t even imagine a 24 hour EEG. My little one had an hour long one, and that was enough. I hope you get the answers you need.

  20. Wow, sounds like a long day (and night) for everyone! Hopefully they’re able to get the info they needed from the EEG so you don’t have to go through it again.

  21. I’m so sorry you had to go through all that but I’m glad you finally got it taken care of!

  22. Oh, your poor guy, I’m glad it’s all over for him now though! I can’t imagine how daunting it must seem when you don’t know exactly what’s going to happen – but posts like these really help so much! Thanks for sharing <3

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