The Rover and The Ice Storm

Back in early January, we saw the neurologist for a follow-up regarding Greyson’s seizures and severe headbanging. The doctor placed him on a new seizure medication routine and scheduled an MRI to check for any new damage or cause of migraines. We elected to have the MRI done in Philadelphia, at the CHOP main neurology hospital, the Buerger Center, since we previously did an MRI in August of 2019 there. I was monitoring the weather since Monday, due to a snow storm coming into the area, expecting to dump a few inches of snow on us and I REALLY did not want to reschedule his MRI. To get in for a sedated MRI already took long enough, prolonging it would only make this process harder.

Now, since the whole stitches fiasco last week, Greyson has been having a tough time walking into medical facilities. I guess its the whole “White Coat Syndrome” you read about in Psychology books, where the patient gets all nervous when they see a doctor and their blood pressure spikes, etc. Not to mention, this poor child has been poked and looked at by doctors for the past four years. Due to COVID protocols at the hospital, Greyson was required to have a negative COVID-19 test, resulted no more than three days from the scheduled MRI. Derek took G to the lab on Tuesday for his COVID test, which went about as well as you can imagine- four staff (and Derek) holding him down, just to get a quick nasal swab. The number 1 reason why I miss him being small: less people to restrain him. That evening, we received his negative result and I sent it over to the CHOP sedation team to proceed with the MRI on Friday.

Many conflicting weather forecasts later, it looked like we were set to receive about 6-10″ of snow Thursday, with snow ending very early on Friday. Perfect! The snow should end before we have to be in Philadelphia early on Friday morning. NOPE. Luckily our area received more sleet/freezing rain than snow, so that reduced the amounts for us by a few inches. All in all, by late Thursday evening, we received about 5″ of snow and it began to sleet a little before we fell asleep.

We were set to arrive at CHOP by 7 am on Friday morning. Not thinking too much of it, I figured that we could definitely do the 2 hour drive, since I was sure the PA Turnpike and main roads would be okay. I got up around 3 am and checked outside- no surprise that we had another light dusting of snow, but it didn’t look bad at all. Walking out to the car in my Old Navy driving loafers, the ground was slightly icy, but nothing too bad, as long as I walked along the salted walkway. We got in the car and I began to back out of the driveway. Side Note- if you’ve been to our house, you know our driveway is probably the worst thing about the property. A HUGE hill, which starts extremely steep, dips off into the cul-de-sac at the end of our quiet street. Well, I can say that even with AWD on and going VERY slowly, backing out of the drive turned into a large slip and slide for my Equinox. Once I regained control at the bottom of the drive, I was very concerned about enduring two hours of driving, if the roads were anything like this. To get onto the main highways to get us to the turnpike, we had to take some rural back roads, which were not yet plowed or salted. Needless to say, it was quite the “white-knuckle” drive the way up 222 North to the turnpike. The only time I truly feared for our trip was on 222 right before getting off onto the Turnpike- a huge tractor trailer was behind me and I hit some slush/ice and began to fishtail, driving about 50 MPH. Luckily, I was able to steer into the slide and we were able to safely get onto the turnpike, but only after the truck driver flashed their lights at me and beeped. RUDE. The rest of the trip went smoothly, the turnpike wasn’t too bad, minor spots here and there and the streets of Philadelphia were pretty much like the back roads here in Lancaster.

The staff at CHOP were fantastic. I said several times to Derek, I hate the drive to Philly, but the care Greyson received was unlike any other hospital we have been to. The staff had his behavioral plan in hand, so they knew what exactly would trigger him and what would help keep him calm during our visit. Childlife (the staff dedicated specifically to keeping children calm and distracted during difficult appointments/procedures) brought in their newest gadget, The Rover. The Rover is a large wooden box on wheels, about 5′ tall, that housed a projector, music player, color-changing bubble lamp, and fiber optic cables that also changed colors with the bubbles. Greyson absolutely loved this thing. It completely calmed him and kept him distracted from the staff walking in and out of the room, prepping for his sedation. When the MRI machine became available, the anesthesia team came in and administered Midazolam which is a nasal spray medication that almost completely relaxes the body within 5 minutes. It relaxes the patient so much, that it makes it impossible to struggle when getting an IV put in.

Enjoying the Rover

Once Greyson received the sedation medicine, he was out pretty quickly. We were assured that he would be okay and were able to kiss him goodbye before going into the lobby to wait. To pass the time, Derek and I decided that we were going to watch the latest episode of WandaVision on Disney Plus (if you haven’t watched this yet, you’re missing out!). We sat and watched the episode and once it was finished, we waited about another 25 minutes until being brought back to Greyson. Once we got into the room, Greyson was still asleep. He typically takes awhile to get up from sedation/anesthesia (very much like me), so I wasn’t expecting him to be up right away. This time, it did take a lot longer than any other time he has been under sedation, about 50 minutes total. I slowly removed the layers of warmed blankets from him, to help expedite the process to get him up and moving. Eventually, he did wake up and was very displeased he was in the hospital. He removed his supplemental oxygen tubes and was about to work on removing his IV, when I was able to get him to drink some juice, a requirement before discharge. Once he was able to drink a little and wake up completely, we got him dressed and were ready to go home.

He is out cold

Greyson was a fall risk, so he was strapped into a wheel chair for the discharge and short walk back to the car. We packed him in and left the hospital. Luckily by this time, the sun was out and the temperatures had increased enough to melt some of the ice and snow, so the roads were so much better than the morning had been. We made it home in pretty good time, since the speed restrictions on the PA turnpike were lifted. Once we got home, I picked up Roslynn from my parent’s house, who was having a Nana & Pop-Pop sleepover. We got back home, and the Martin besties were reunited. The rest of the afternoon was pretty low-key and the kids were happy to be back together.

Snuggle Bugs

I was not expecting the MRI results until Monday at the earliest, so I was pleasantly surprised to receive a message from the Neurologist. She stated that Greyson’s Periventricular Leukomalacia (PVL) AKA brain damage from birth, had not progressed or regressed. Essentially meaning that there was no new injury to the brain from his headhbanging, but his Intellectual Disability and Epilepsy is most likely caused by this injury. 92% of children with PVL will develop cerebral palsy in their life, which I am honestly shocked he has not been diagnosed already due to his gait and lack of muscle tone. We will cross that bridge if/when it comes, but for now, we are grateful for no new injuries and our healthy little man.

PVL Seen on the MRI. Note the darkened white areas.
Side shot of the little dude’s head. I love his little nose and lips!
One last photo of his little noggin

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