In the spring of 2018, Greyson was written a prescription for a fitted medical-grade helmet, to keep his head safe from the headbanging he does. In 2018, his headbanging was minimal- typically only when he was mad or upset about something and it didn’t last very long. Fast forward to December 2019 and his minimal headbanging turned into severe headbanging, leaving marks on his forehead, even severe bruising. He began to headbang even when he was happy, which Derek and I assumed was a sensory output that we needed to get under control.
He began to really hurt himself in early 2020, which prompted our doctor to write another prescription for a second fitted helmet (his first helmet had bit the dust in summer 2019). Due to still being employed by WellSpan in January, I was encouraged to go through a WellSpan medical supply company to get his helmet. I contacted their office and had the pediatrician’s office fax over the prescription. We then waited for any correspondance from the supply office, which seemed to take abnormally long. Every time I would call, there were lots of different people I was transferred to, nobody knew the status of the helmet and couldn’t figure out what the hold up was. I had extra time on my hands in early March, after I was no longer employed, so I decided to get mean about the order. I contacted the higher ups from the medical supply company and spoke with the manager of the individual responsible for Greyson’s helmet order. I informed her that I had been calling for over 2 months, trying to get the helmet status and that we were in dire need of the helmet, due to an increase in self-injury. Within an hour, I had a return phone call from the staff responsible for the order. The staff member stated that he had attempted to contact me twice by phone in the past two weeks, which was not true, or else I would have taken his call and had Greyson’s helmet in hand. After voicing my concern and informing the staff that this was a long overdue order, I was taking measurements for Greyson’s new helmet.
Due to COVID19, the supply company was closed to the public. I had received the staff member’s personal cellphone number and had a detailed update when the helmet was ordered, shipped and received. Though I truly try to be level headed and kind, sometimes it does pay off to be nasty, I guess.
The helmet came in on a Tuesday and was picked up by my in-laws the same day (they lived closer to the supply company than we do). Back in 2018 when we were using the helmet for his minimal headbanging, any time we brought the helmet out, Greyson stopped hurting himself almost immediately. But as his self-injury increased, simply showing him the helmet no longer worked. We did not have Greyson wear his helmet at all hours of the day, as he was really only needing it when he was transitioning between activities and when he upset (which is when the headbanging was really happening).
June began with another change in our family’s schedule, I started to work again. Prior to working, I enjoyed three months of being a stay-at-home mom and had both Greyson and Roslynn on a consistent schedule. Greyson’s tantrums had decreased and he appeared to be happy and content with the schedule we had established. When I began working, even though it was part-time from home, Greyson’s schedule was completely thrown off. He no longer had a set breakfast/lunch time and no longer settled for a nap around 11:30am-12pm like he had done for the past 3 months.
Fast forward to this past Thursday. I was feeling really good about scheduling and the tasks of the new position, but I knew that they kids were both having a difficult time with the change. I finished working at 1 pm on Thursday and came downstairs to hang out with the kids and get them a snack. We had no furniture in our livingroom because we had a new sofa set ordered and pending arrival. The kids LOVED the extra space in the room, running around and taking advantage of the empty area. I thought Greyson was pretty low-key and mellow Thursday afternoon, even falling asleep around 3 pm, which wasn’t typical of him. I chalked this up to him being tired and not having a nap yet, so I let him lay down for awhile.
I woke Greyson up from his nap around 5 pm, before I made dinner and he was his typical “threenager” self, not wanting to wake up. Us trying to wake him continued well into dinner, then well into the nightly news. Around 6:45 pm, I told Derek that he (Greyson) had to get up and eat something, since he didn’t have snack for me earlier in the afternoon. Derek sat next to Greyson and began to rub his back, neck and head to wake him up. Startled, Derek jumped up and said that something was wrong with Greyson. I immediately thought that maybe he was having a seizure, so I was surprised that he was awake and walking when I looked up. Derek brought G over to me and told me to feel his head. I did. I was shocked. Greyson’s head felt like Jello. I couldn’t feel any sort of skull. Just softness.
Being the Queen of WebMD and Google, I looked up “Why is my child’s head soft”, which only returned articles and information about newborns and their soft spots. Having given up on the internet, I called the pediatrician’s office and was connected with the on-call nurse. After she consulted with the doctor on call, the nurse prompted us to take Greyson to the Emergency Room at LGH. An all too familiar feeling, Derek got G ready and I packed up his backpack with the essentials (meds, diapers, etc.). I decided I would stay home with Roslynn, who had already begun to fall asleep and because my immune system is not good and COVID is still lingering, I figured this would be the best option. The next bit of information is coming from Derek, so I’ll summarize what he had explained to me.
They got to the ED at about 7:30 pm and it was packed. Individuals who had symptoms or were suspected of having COVID, were placed in a separate area of the hospital, to avoid contamination with those who did not have a COVID concern. He checked in with the receptionist at the front desk, who knew that they were coming, per our pediatrician calling and informing them. He took Greyson to the section of the ED which was a little more secluded from the rest of the ED and it was easier for Derek to confine him in that spot, rather than letting him run wild among the injured and sick. When they were pulled back into triage, the staff member obtained as many vitals as he could and prompted Derek to bring G back into the lobby area until a room was ready. In the midst of being shuffled around, Derek observed a man getting agitated because his mother was suffering from a stroke and still had not been registered. The man became so incredibly irritated, he did not notice that his mother was taken back at first, and proceeded to take his temper outside to the street. Lime street in Lancaster near the ED is a cute little area, stuffed with different physician and specialist offices, most of whom are affiliated with LGH. In the time we live in, the man became so upset, that he was tackled by police who were called, in addition to the ED security staff. I guess it provided much entertainment for all in the ED, since the area is comprised of nothing but glass windows, facing the area where this man was having his fit.
Once Derek and Greyson were called back to the exam room, the doctor came in and felt Greyson’s skull. He too agreed that something was wrong and that his head should not be swollen and tender like it was. He ordered a CT scan immediately and Derek placed the helmet back on Greyson’s head for safety. Staff came in awhile later and attempted to sedate Greyson with a nasal spray (it worked really well for him at CHOP, so Derek had consented to attempting to try that again. This time however, it didn’t work. The staff placed Greyson in a papoose, similar to what he has at John’s Hopkins when he has laser treatments for his face, and got the images that they needed for the CT scan.
Turns out, due to severe headbanging earlier in the day, Greyson had a huge subdural hematoma between his skull and scalp and a likely concussion. The jello type feeling in his head was collected blood, just hanging out in there. Because his head was not actively bleeding and his brain was not impacted from what the doctors could see, he was sent home. After a follow up conversation with the doctor at the ED and the Neurologist, it was recommended that Greyson now wear his helmet at all hours of the day, whether he is happy or sad, just for extra safety of his head. In the meantime, we have to observe him closely until the hematoma is completely healed, to make sure that he doesn’t have any nausea, vomiting or other complications that accompany a brain injury.
The boys got home around 11:30 pm and I had already been weighing my options when it came to being sure that Greyson was getting the appropriate structure and supervision he needed during the day. I made the difficult decision to step down from my new job and be the stability that Greyson (and Roslynn to an extent) need. Upon submitting my resignation on Friday, the owner of the business I was working for, was completely understanding and as a mother to young children herself, could really empathize with my situation. She stated that due to the situation, I would be able to keep my job within the company, but I would be an “as needed fill-in” until the fall, when I could most likely do the company’s billing and other miscellaneous tasks in the evening, after Derek is home from work. I am so appreciative that I am able to stay on staff there, and hope that once Greyson is back in preschool and stabilized, I may be able to restart my tasks within the company.
I’ve also decided to come out of my “retirement” from teaching voice lessons, and really put my time and attention into that for the evenings. Its a flexible position where I am in control of my own schedule, teaching as many students that I want to. I revamped my marketing skills and reached out to some former students, to see if they would like to study again. Needless to say, I’m thinking I could potentially have a full studio again by the end of summer. I know that this is a good move for our family and will give the kids the attention they need during the day, and still allows me to get out of the house and do something on my own a few nights a week. Contemplating changing my LinkedIn account to “Full-time Mom, Fill in admin staff and optimistic musical entrepreneur” as my current job. Maybe I need to work on that job title a little bit.
Thank you so much, that means a lot to me. We always wonder if we are doing the right thing, and I know deep down we are. I appreciate you reading my blog and reaching out to us!
Thank you for sharing your story. Your wonderful family will be in my prayers. Your children are adorable and will someday realize what loving, dedicated parents they have. God bless!
Deacon Jane Miron