Yesterday was the day of Greyson’s functional MRI at John’s Hopkins in Baltimore. As previously discussed in my other posts, anytime we travel to Baltimore, I make sure G’s bag is packed the night before a d stocked with his favorite toys/books. This Friday was atypical- I went into work before heading down to JH, which I usually don’t do, but we were a little short-staffed.
I got up at my regular time, 4:00 am and got ready to start the day. After being traumatized during our first attempt at an MRI with Greyson (lonnnnnng story for another post), I was a little nervous for the procedure. I got to the office and completed my typical first thing tasks of the day, checked in a few patients and left to go pick up G and Derek.
Roslynn stayed with my parents, so Derek agreed to meet me at their house to drop her off and to switch G to my car. I made it to my parent’s house and kissed Roz goodbye and made sure the car was ready to go. We hit the road around 8:45, which gave us a little extra time for traffic, parking and navigating our way through the children’s hospital wing at JH.
The purpose of the MRI, or big ass magnet as I call it, was to look further into the different sections of Greyson’s brain that could be impacted by these seizures. It was also to check specifically if the first MRI missed identifying factors of Sturge-Weber Syndrome. Apparently, unless specific imaging was used with different axis and positions, many MRI procedures miss the images doctors need to diagnose SWS. Because G was diagnosed with epilepsy, it does change the previous rule-out of SWS. Dr. Comi wanted us to do a specific sequence of imaging just to confirm or rule-out the possibility.
Greyson’s arrival time was 10:45 am for a 12:00 pm appointment. Upon parking in the garage, we realized that we took the stroller out to make room in the trunk for miscellaneous items, so Derek ended up carrying G the entire way. I check-in and get everything ready for the MRI, and I have a seat in the waiting room. Greyson is a very impatient kiddo, so he stayed in the hallway, running around and being active. Luckily the child radiology department is towards the top of the building, and away from people, except security, staff and a few other families, so Greyson had free reign of the hallways.
10:45 comes and goes and Greyson’s name has not been called yet. By 11:30, G had run around the halls with Derek so much, he literally ran himself to sleep. Luckily he slept until his name was finally called at 12:20 (G had also been fasting since 7 pm on Thursday), and we made our way back to pre-op.
Greyson woke up during the pre-op because people were poking at him and it was quite noisy. He was getting fussy just as it was time for anesthesia to be administered. You would think that after seeing your child endure so many tests and appointments, that you would get used to seeing them cry and struggle, but I think it definitely gets harder.
After we gave him kisses and he was sleeping, we were directed to the parent waiting room until he was in the recovery room. Many parents were there charging phones, eating lunch (vending machine food) and watching over the TV screen for their child’s number to change from operating room to recovery. The only nice thing about the waiting room, was that it was relatively quiet, had comfy seats and we had a nice view of Baltimore.
After about 2 hours of waiting and a pack of M&M’s later, we were called back to the recovery room to see G.
Greyson was dressed in his regular clothing still, surrounded by wires and nurses. We opened the door and he had just sat up, but was extremely drowsy. I knew immediately that he was going to throw a tantrum if he didn’t have food or some juice, so I gave him some while we waited for discharge instructions. Finally, about another 45 minutes later, we were discharged and made the long walk about to the car. I was so relieved that we were done and going home. I always feel a little on edge being in a bigger city, so once we hit I-83 N, I typically feel a huge sense of relief come over. This week, I didn’t. I think it’s because of exhaustion. We are so tired and mentally drained from trying to both work full-time and manage 10+ appointments per week. It didn’t help that rush-hour Baltimore traffic on a Friday afternoon, is hell.
Greyson did great. He truly is such a trooper. I feel so sad for him, but I know that this is the best route for his treatment. Unfortunately, we will not have any results until September, when we return to JH for a follow-up. Until then, we continue on with the anti-convulsants and monitor G for regression in skills and seizures. More to come soon, I’m sure.