Due to an insurance snag, we were told we needed to reschedule our 24 hour EEG. We already had me off work, Alex off work, Alex’s mom off to take Stella Tuesday, my mom off work to take Stella Wednesday, Nolan excused from school, speech, and ABA. We REALLY didn’t want to reschedule.
We worked with our pediatrician (PCP) and our neurology office who helped work with the insurance and, long story short, we find out TODAY if we can get the test TOMORROW. That’s not stress inducing at all.
Nolan will be sedated for placement of the sensors since it’s a particular and timely process and we feel it will be easier to say hands off his “hat” than to keep him from touching each individual one as they place them one by one and he sees them do it. This means no eating after dinner due to the sedation though.
We need to be in the hospital for a full 24 hours. We have brought out a bag of all the tricks to help time pass. We also look like the crazy bag people.
Nolan’s busy bag has all his toys/sensory items he has shown interest in.
Snack bag for after sedation. Filled with all his favorites but also some for mom and dad as we are going to be there 24 hours too. We will also bring any and all meds Nolan takes for them to record and for him to take.
Clothes bag for all 3 of us. We will all need pjs and clothes. Nolan will have a couple pants and underwear in case of an accident. I don’t know if he can change with the sensors on so I made sure to pack all button ups including pajamas.
Parents busy bag will have laptop, phone chargers, cribbage board, eye masks to try and help with sleep, books for us to read.
Sleep bag will have Nolan’s weighted blanket, bed time book, sound machine, pillows for mom and dad, eye masks for mom and dad, and his bed routine stuff-meds, toothbrush, etc.
Our appointment got moved to the earlier slot so we are arriving at 6:45. Since this will involve a 45 minute drive and waking up Nolan, we thought it best to drop Stella off the night before so it doesn’t add to the wake up time.
Stella’s bag will have her pjs, 2 days of clothes, zippy, and sleep items.
We think we are as prepared as we can be. Feeling prepared has helped my panic stay in check and me not to freak out– too much. I’m just waiting for the a-ok to get the test. This is my baby’s brain we’re working with. He struggles to talk and to sleep and I want to help him and rule all I can out ASAP. I just want to help my baby.
Hormones are not helping with my panic. I am working to keep it all in check but a lot of the time I panic and then remember hormones are making it worse and spend a lot of time trying to relax and apologize.
I try to stay calm for Nolan. I don’t want him to be afraid because I am. I want to stay calm for Stella. She is so sensitive and takes me by the cheeks and says “what’s wrong mommy” when I cry. I don’t want to cause her unnecessary stress. And I want to stay calm for BG3. This baby doesn’t need stress interfering with its growth and development. The stress of staying calm can cause stress! Phew. Breathe in, breathe out. Pray.
I will update with whether or not the test is proceeding, our experience, our next step, and any results we may have. Keep those positive vibes coming our way and if you pray we’ll take those, too.