Back when I was working in an office, I woke up at 4:15 am every single day. That gave me my “me” time each morning to shower, get ready, watch an episode of my favorite show and to purchase a coffee before my 7:30 am start time at the office. Now that I am working from home and have little face-to-face (via Zoom) interactions, I get up at 7:30-8 am to begin work at 9 am. I’ve always been a morning person, dubbed the granny of my family because I would go to bed at 7:30-8pm and get up between 4-5 am, since I was a small child. My mother always joked that “if (I) didn’t get at least 8-9 hours of sleep each night, I’d get grumpy or I’d be sick within 3 days”. I have been seriously neglecting my sleep as of recently, especially over the past month or so, when my Mother passed away. I’m finding myself staying up until 12 am, getting up for about an hour between 2-4 am and then going back to bed until 8 am, when Roslynn typically comes into my bedroom to wake Greyson for school.
Like Dr. Lynn (my mother) stated, the lack of sleep finally came up to bite me. I started with a sore throat/stuffy nose on Wednesday (last week), after Roslynn brought home the lovely sickness from her 1st grade classroom. Unfortunately, the love was shared to Greyson and Derek, too, so all four of us have been sick for about a week now. With Greyson’s upcoming procedure, we didn’t want to take any chances of him being turned away at the hospital, due to his symptoms, but luckily he was able to manage and the procedure was still a go-ahead.
When the nursing staff contacted me on Monday with an arrival time of 5:30 am for Greyson’s surgery, my head hurt even thinking about getting up at 3:15-3:30 am to leave by 4 am. With the lack of sleep already weighing me down, the drive to Philadelphia at 4 am was not thrilling. Worst of all, Greyson is afraid of the dark, so driving before the sun comes up, was not easy. Apparently trucks also flood the PA Turnpike on Tuesdays too. This irritated Greyson (and me) quite a lot. He spent about an hour of the trip, crying and high-pitched screaming. Sleep deprived, hungry, lacking caffeine and driving 70-80 Mph along side of hundreds of trucks, was really not helping my excitement for the procedure. I could feel my anxiety closely hitting my breaking point. Luckily, a few songs from Encanto calmed Greyson down, and he ended up falling asleep for the rest of the ride to CHOP.
The area around CHOP has been under construction for well over a year. The area is flooded with pedestrians, many students or residents at the hospital, and the bumper-to-bumper traffic is enough to stress even the coolest customer out. This time Derek knew where we were going, since I had never been to the main hospital before. We entered the underground parking lot at the hospital and to my surprise, there was little parking available. We had finally found a spot and hurried up to the main area for check-in. Most of the morning was uneventful. Greyson has been doing SO WELL with getting his weight, temperature, blood pressure and breathing checked out. Guess 5+ years of it finally has given him enough exposure to allow him to tolerate it. We met with several nurses, the child-life team and the anesthesiologist before Dr. Kennedy came in to brief us on Greyson’s procedure. After thorough explanation and questions being answered, we were ready for Greyson to receive his “happy juice”.
“Happy Juice” is what we call the Versed that is administered to Greyson before an IV or procedure is started. He receives it in the form of a nasal spray, and typically begins working within 5 minutes. I was a little weary, not optimistic that the spray would work, since he was fairly congested. Proving my skepticism wrong, Greyson was feeling VERY good within a few minutes, and he was ready for surgery. We said our goodbyes, but rather than have him put under right in front of us, he was such a big boy and was wheeled to the OR without us. As happy as I was that he is finally allowing others to touch him, or able to go places without us, it made me sadly realize that our little man isn’t so little anymore.
In the surgical waiting room, Derek and I both fought off the urge to fall asleep. We waited for about three hours before Dr. Kennedy briefed us that everything went well. He did warn us that Greyson would be a bit red in the face, due to his allergy of adhesives and the need of having to use tape to keep his eyes closed during the procedure. Once we were done talking to the surgeon, we were brought back to Greyson, who was still very much out of it. In fact, it was over an hour before he finally was able to slowly wake up from the anesthesia. I was taken back by the size of Greyson’s incisions. He has one on his neck, where the lead is wrapped around his Vagus nerve, the other on his chest, where the implanted device is. Both are fairly large, but I am hoping we will see them fade as soon as the spots heal. Once he was awake and able to tolerate some fluids, we were ready to get Greyson home. The ride home was fairly smooth. The Schuylkill wasn’t too congested and we were able to get home within a reasonable time.
So far, Greyson has showered and hasn’t had any issues with picking at his incisions yet, which is a huge concern of ours. Infection of these spots is high, because of where they are located, so we are making sure they stay clean and there are no signs of infection. Next week, we will see the neurologist again and she will activate the device. As of right now, our job is to make sure Greyson tolerates everything well and that there are no issues. Every two weeks, we will be required to go into the office and the neurologist will gather data from the device, and increase its power. Within the next couple of months, Greyson will be fully healed and his device will be fully functioning. We are extremely hopeful that the device will work and we can get Greyson some relief with these constant seizures, especially before our trip down south this summer.
Greyson doesn’t have many restrictions, post-surgery. We laid low yesterday once we were home, and again today, just to give his body time to recover. He got a new trampoline for his bedroom (my idea to try and have him stop jumping on beds), which he LOVES. He spent the entire day on Sunday, just bouncing away. I must say, though it does take up most of his bedroom, it is probably the best investment we have made in awhile for him. It seems to benefit us more than him, tiring him out for us to get him to bed sooner. AKA a win for us all.
Sending prayers! The incisions will look cool when he gets older. So happy for you that you got through the first part. Thinking of you.