My son was scheduled for a 24 hour EEG yesterday however, it had to be rescheduled. They told us ahead of time that they would call us sometime between 730am-2:00pm yet I got a call at around 1130am saying they had too many sick kids in the ER and they had no bed available for my son’s observation. Needless to say we were not happy. At all.
We are in the process of scheduling the EEG to be done at a different hospital so we aren’t exactly sure just yet when it will be. If you need a pediatric neurologist in the Chicagoland area…..good luck. This is crazy.
To backtrack a bit, my son started with breath holding spells literally his second day on this planet. He has progressed over time from merely holding his breath, to turning blue and passing out. We took him to a neurologist last May and she didn’t see any need to do an EEG and just ordered some blood work…which all came back normal.
Fast forward to my son having staring spells and some strange shoulder shrugging and eye movements. I called his pediatrician and she recommended taking him back to the neurologist. However, the doctor he saw last May left the practice in August and they didn’t replace her. There is now only one pediatric neurologist working for the hospital and his wait time was crazy. I ended up bringing him for a basic EEG at a major hospital downtown which came back normal. When we finally got in to see the neurologist he said that with all the issues going on with my son (the breath holding, the staring, the shrugging, the speech delays and the gross motor delays) that it would be preferred to do a 20 hour EEG instead. That is considered the gold standard according to him.
Ok so since we ended up getting booted from our appointment, and my husband is about to have a stroke from his anger level, we are going back to the hospital downtown because they, apparently, are the only other pediatric hospital that handles EEGs for the little ones.
This. Is. Crazy.
At any rate… I did prepare our bags for the EEG that never happened and would love to share with you! In Part Two, I can explain if and how it all worked out and anything else I would have done differently.
My Overnight Bag-
Only one of us can stay with Thomas over night and there is no way I’m leaving my kiddo so I guess that’s me! I packed light….pajama pants, a comfy shirt, my morning meds, toothbrush/toothpaste, slippers and face wash. I’m assuming I won’t need anything more than that. I also did throw in an extra phone/iPad charger since the battery on both doesn’t last long at all.
Thomas’ Overnight Bag- * Disclaimer… Affiliate links through Amazon are below and may produce a commission if you click and buy*
We were instructed to dress him in something comfy that he could wear all day since once they put the helmet of wires on his head, they wouldn’t be able to dress and undress him. I had him dressed and ready to go with a thin footie pajama. I threw a zip up sweater in his diaper bag in case he got cold. I also packed the regular diaper bag items… diapers, wipes, a few snacks and a sippy cup.
The hospital also told us that we should bring things from home to make Thomas feel comfortable, so I packed a bag full of his favorite toys to play with!
Vtech dump truck
Books, books, books!!!
Hopefully I will be able to schedule this to be done in the next week or so and I promise to come back soon and update with Part Two as soon as I can! It will be a MAJOR relief to get this done and over with once and for all!