Slippery When Wet

Lancaster County saw it’s first significant snowfall in years, during the first week of February. I absolutely loathe the snow and don’t go out in it, unless I desperately have to. Because it’s been quite some time since it snowed enough to “play” in, Greyson had never felt snow before. About a foot of snow fell in our town, so we went out to play in it as soon as the larger flakes died down…..we meaning: Derek, Roslynn, Greyson, Duke and myself. Duke loves the snow, so it was fun seeing him interact with the kids, who were both walking through snow right above their knees. I was very impressed with Duke, who goes outside on a tether that gives him free-range to the backyard. Any time that Greyson would get close to the perimeter of the yard, he would bark or go to Greyson and redirect him back to the playhouse we have outside for the kids. Greyson lasted about ten minutes outside before he got too cold and wanted to go inside. I think he liked the snow, but didn’t like the thick winter clothing.

Definitely not feeling the layers

Roslynn ended up staying outside with Derek and Duke for about an hour, until her cheeks were bright red from the cold. We had a minor snowfall last weekend and last evening, with more projected in the upcoming week. A very active winter weather pattern for the Pennsylvania area. Yay…..not.

We began Greyson’s new seizure medication about three weeks ago now, and we have noticed he’s been doing pretty well on them. He isn’t having any of the side effects that we were warned about, except for flushed skin when he first takes an increased dose (we have to slowly increase this med to avoid blisters, which I guess is a common issue if given too much of this med, too soon.). He hasn’t been too drowsy and his sleep has been a bit more sound, which is always very welcomed. The only downside we have seen is that he has been a little more aggressive recently, but I think its Greyson testing how far he can push us until we react to the aggression. If you’ve ever had a child smack you across the face, or headbutt your nose for no apparent reason, then you know how difficult it is to keep a straight face and not react at all to random acts of violence from a toddler. I have been enjoying all of the snuggles and kisses he’s been giving as well, but once he turns into Mr. Hyde, the gig is up and I am typically protecting myself with couch pillows.

Look how sweet my Dr. Jekyll is

Greyson’s hair was getting super long, so I scheduled an appointment for him yesterday with ShearFade in Strasburg. Kim, the owner, is a former special education teacher and is absolutely excellent with Greyson. She is patient, kind and doesn’t get annoyed when Greyson frequently tries to escape her chair. Probably not the best idea to schedule it on a Wednesday, since its our busiest day of the week, but it was really the only time that Derek had available for this week. Derek took a new position within his agency, so he went from an hourly rate to a salary position, but he did lose some flexibility now that he’s tied to a desk for half of the week. After the busy day of school, therapies, virtual class, and dance, I know that taking G for a haircut was the last thing that Derek wanted to do at 6:30 at night. Luckily, the haircut went well and despite a tantrum, Greyson came home with less hair. Fast forward to about 8:30 pm (Derek was home for about 45-minutes at this point), Derek took Greyson up for a bath, part of Greyson’s nightly routine.

Now, Greyson has been experiencing some difficulties in the bath recently, jumping in and out whenever he has the chance. He thinks it is his personal pooltime, so he isn’t really concerned about anything but jumping around. We have had a few instances where he slips and slides around, but doesn’t get hurt typically because Roslynn is in the tub to catch his fall. Last night though, Roslynn was pretty beat from dance class, so I promised her that she could have a bath this morning since she wanted to go to bed. About five minutes after I heard the tub water stop running, I heard a very loud BANG coming from the upstairs guest bathroom. Immediately after the BANG, I heard screaming and crying……and this was the “I’m hurt” cry that Greyson does when something is very wrong. Next thing I know, Derek is hollering for me to hurry up the stairs and as I approach the bathroom door, there is a lot of blood in the tub and on a bath towel that Derek is holding to Greyson’s face. He managed to jump into the tub, but instead of jumping into the water directly, he hit his face on the side of the tub, right onto Derek’s left hand, clipping Derek’s wedding band on his face. After assessing the siutation, I determined that G was most likely going to need stitches. I made the necessary phone calls to the Pediatrician and had them fax the referral over to LGH Emergency Department (I would’ve taken him to an urgent care, but all were closing at 9 pm and it was 8:52 pm by the time this all happened). Due to COVID-19 and the fact that I can’t handle Greyson very well, like Derek can, so Derek elected to take G to the ER. I felt absolutely awful because Derek was going out again and had only been home for about an hour out of his then 13-hour day, but it was the only way that G was getting stitches.

Front view of the injury
Side view of the wound

Derek got to the ER around 9:15 pm and was told that the wait was going to be awhile……little did we know, awhile meant 3 hours. Exhausted from working all day, taking G for a haircut and now waiting in an emergency room lobby, he was done for the day. Luckily, I was able to call and say something regarding the wait time and the fact that our son with special needs was waiting in a COVID infested petry dish, waiting for a few stitches. RIDICULOUS! This helped Derek get put into a “fast care” room almost immediately after. The doc did a quick evaluation of the area and determined G needed stitches…….well, duh. About an hour later, four stitches were put in to close up the very wide wound and Derek was waiting for discharge paperwork. By the time he got home, it was about 2 am. A ridiculously long, busy and exhausting day. Luckily, Greyson had no school today due to the minor snow overnight, so he was able to sleep in a bit. Since waking up, he’s managed to pull one of the four stitches out. Hoping he can keep the other three in until his skin has healed enough to close the gap.

The next week or so will be just as active as the local weather forecast. Greyson is having an MRI next Friday, February 19th to assess for any progression in his PVL, or if there is any new brain damage caused by Greyson’s self-injurious behaviors. Because the procedure require sedation and fasting, we are set to arrive in Philly by 6:30 am. WOOF. He also needs to have a negative COVID-19 test resulted to CHOP before we can check in, so hopefully all goes well and smoothly with that test on Tuesday. Please continue to keep G in your thoughts, since this next week will be hard for us with his school being on a 10-day break and with these upcoming diagnostic tests.

Next time you get into the shower or tub, just remember- it definitely is slippery when wet.

Audio

The Journey Begins

Narration of my first blog post, dated from June 2018. “The Journey Begins” briefly explains my pregnancy and the birth of Greyson, essentially where our story begins. Enjoy!

Helmet

Minor Headbanging injury

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.

A Pre-Helmet meltdown and this was the result

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.

Once we got the helmet, he started to punch and scratch himself in the face

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.

Post hospital happy face and happy because our furniture still had not arrived
After work snuggles with the babies