Greyson was scheduled for a 48 hour EEG in the pediatric wing of York Hospital on Monday. Check-in was set for 7:30 am and we had about a 45-minute drive to the hospital. Luckily, I packed Greyson’s bag, favorite blanket, toys and cozy PJs up on Sunday evening, so we were ready to grab and run on Monday morning.
First of all, I hate driving on route 30 and 83 during rush hour traffic. The commute was expected to take about 45 minutes but ended up taking an hour because of traffic and the ridiculous construction at the main entrance of York hospital. The vallet parking crew was nowhere to be found, so I feel dropped Derek, Greyson and the bags off at the front entrance and parked the car in the nearby garage. I was already annoyed because Derek had misplaced the directions with where we were to go to check-in, so the fact that we were running behind and parking was a nightmare, didn’t help at all.
Once I rejoined Derek and G in the lobby of the hospital, we made our way through the building to the EEG/MRI department. We checked in and we’re promptly taken back to a room with a huge air duct, connected to a machine and leading out of the one small window. Initially, I thought this was the room we were spending 2 days in.
25 gold plated electrodes were super glued to Greyson’s head. My boy’s beautiful curls were brushed out and smothered in super glue and wires. He never lets me brush his hair, so you can imagine how great it was for him to lay on a table and have someone mess with his head for 30 minutes. Greyson was a mess. He began to scream and cry so much, that he eventually cried himself into a comatose state. Through our journey this far, we have become accustomed to G screaming and fighting us at appointments and procedures, but I had never seen him fight this hard. Once the tech completed hooking up the EEG and wrapping Greysons head like a mummy, we were on our way to the pediatric wing.
We got settled in a small room on the peds wing and a camera was turned on to film Greyson for the next 48 hours. Almost as soon as we were settled, nurses and staff were coming in to help us feel comfortable, and to assist us in ordering some breakfast (we were all fairly hungry since we were in a hurry to get to the hospital). Immediately after eating some toast, Greyson zonked. Lunch came and went and still, Greyson was laying face down on the hospital bed, covered up with his favorite blanket. I’m assuming he had been exhausted from fighting and crying so much when placing the electrodes because he ended up sleeping for 3 hours….which gave me plenty of time to take a nap as well.
Once Greyson woke up from his slumber, we began seeing his typical motor tics, which usually occur before he has his staring spells. We had a button that we had to press everytime we saw an episode, so that the neurologist knew to check the EEG and video for seizure activity. I left the hospital around 3:45 pm so I could pick Roslynn up from her grandparent’s house, but in the time from G waking up, until I left the room, I had counted close to 30 clicks.
I picked Roslynn up and we went home and settled down for the evening. I ended up face-timing Derek before bed so that we could say goodnight to G and daddy. At the time of the video chat, G had eaten very well and was ready for bed. He had blood work set for that evening, but because he had his medicine, it was rescheduled for Tuesday morning before his next medication dose.
I was surprised to hear from Derek that Greyson was going to be discharged on Tuesday, after spending only 32 hours in the hospital. After speaking with the neurologist and getting the blood work completed, Greyson and Derek were discharged and sent home. This was much relief to me because I felt that the house was very quiet and empty on Monday, and I was not prepared to have another night of silence.
Results began to trickle in to Greyson’s patient portal on Tuesday afternoon and into this morning. He had some abnormal blood results, which will be addressed at his follow up appointment next week and the neurologists report showed that Greyson was having frequent seizures in his sleep. On his previous EEG, Greyson’s seizures were focused primarily in his parietal lobe, but this EEG showed sharp seizure activity in the left side of his temporal lobe. These results are both good and bad because his parietal lobe seizures seem to be controlled with the Trileptal dose he’s on, but the temporal lobe activity is not news we were expecting.
Moving forward, we continue to press on and find how we can help our little man. Upcoming appointments with Dr. Comi, Dr. Stein, the CARD program at Kennedy-Krieger and a genetic specialist, will most likely bring us into February 2019. Many uncertainties await us, but we are pushing along and look forward to seeing Greyson’s personality grow. Who knows, maybe Santa will bring us some much needed R&R and a nice break from doctor’s offices.
Also, stay tuned because Halloween is a week from today, and Greyson is going as a little Chewbacca!