Category Archives: Simon’s Story

If you missed Part One to the story, you can read it here.

Soon after the accident happened, I got an email from Ashley from the blog Under The Sycamore. She had spent some weeks in the hospital earlier that year with her daughter, who had broken her femur and had to be in traction. In the letter, she said to me, “treasure this time” and “soak it in”. At the time, I didn’t fully understand, but I did my best to just enjoy the time alone that I had with Simon and spent every minute thankful for the time I had to hold him and enjoy his sweet smile.

We were super thankful for the chance to be able to not be “trapped” in our room anymore and spent time walking around.

When we were moved to rehab, I commandeered a wagon, that I believe was for patient use, to cart all of the many things that we had accumulated over the week in PICU. I held on to it in rehab and used it to pull Simon to therapy. He really enjoyed sitting in it and being chauffeured  around the hospital. Sometimes we had therapy clear across the hospital, so I was really thankful for the wagon since it was about a mile walk roundtrip (it’s a big hospital!).

The morning of January 12th, the “team” involved with Simon had a meeting that we were included in to review his records and discuss their plan for us in rehab. Because Jesse was working, my mom attended with me. It was quite strange to be the parent at the meeting, while I’m usually on the therapist side of things. I remember how, during most of the meeting, thinking how weird it was that I was a parent, especially since I feel so young mentally, even though I was thirty years old. All of the therapists commented that they were extremely happy with the progress Simon was making and didn’t plan on us being there very long. Our rehab doctor, Dr. Skalsky, reviewed Simon’s CT scans from when we were at Palomar Hospital (hours after the accident) and the ones they took the next day after the surgery. It was incredible to see how “squished” his ventricles were with all of the bleeding that he sustained. It was truly a miracle that he was alive and not brain dead.

Simon had his second day of therapy and his language really started to come back. It came back so quickly that his speech therapist jokingly asked, “Why am I here?” That was happy news to my ears as speech is such an important thing to me and was one of my worries in the beginning.

We were also thankful to be able to have lots of visitors, especially my friends with kids close to Simon’s age as I feel it provided a good example for him.

Very early on the morning of January 13th, I woke up feeling incredibly nauseous. I ran to the bathroom and was suddenly sick…from both ends. I sat on the floor of the bathroom feeling like death, but also incredibly worried that Simon would wake up and I wouldn’t be able to get to him, as he was super attached to me at this time. I was able to quickly get up and push the nurse button to call for help. She came quickly and was very kind, bringing me soda and crackers. I called my sisters and they came down to help me. My sister, Risa, decided to stay the night with Simon, while my sister Renata drove me home. I was relieved to be home in my own bed since I felt so awful and slept the rest of the day.

I woke up in the morning feeling better and since I assumed it was food poisoning (I ate some possibly sketchy lettuce at the hospital), I gathered Liam up and we went to my dear friend Rob’s birthday party that morning. We enjoyed the donuts and conversation.

We headed home awhile later after running some errands. I can’t tell you how freeing it was to be able to drive around and get stuff done after being in the hospital for almost two weeks straight. When we got home, I started to feel miserable again. This is when I first suspected that it was more than food poisoning.

Jesse had replaced Risa Friday afternoon and took Simon to therapy that Saturday. He told me that Simon was doing great and getting much more stable on his feet. He was speeding up his movement and working on climbing stairs in PT. He also improved on weight baring with his right arm, but seemed to have sensitivity in it and didn’t like it to be touched. When he would crawl on it (up a foam ramp for example), they worked on getting his fingers to open up as he kept them in a tight fist. At one point with Simon’s arm and leg on his right side, they used to electro stimulation to “shock” the nerve endings into recognizing that side and we noticed an improvement almost immediately after they did that.

When I woke up the next morning, I still felt awful. I think my incredibly exhausted body was finally just giving up on me. I had no energy to fight this sickness, so I did my best to rest and recover. My parents were so helpful and looked after Liam to make it easier for me to sleep without being interrupted. That afternoon Jesse came home to write a paper. Even though I felt awful and he was focused on school, it was lovely to have a couple kid-free hours in our home together. I had really missed the normalcy.

I had planned already to head down to the hospital the next day as I was feeling a bit better, but as soon as I got up, I got a call from Risa, who had stayed with Simon overnight. She said that he threw up all night and that both of them didn’t rest at all. This confirmed to me that we must have caught some evil flu bug and made me feel like our family was falling apart at the seams.

I rushed down to the hospital, a thirty-mile drive each way, to replace Risa. When I walked in I saw this happy little child, not looking sick at all.

Because he was sick, we cancelled therapy just in case he was contagious. Instead we spent the day hanging out and exploring outside.

Simon still had his “cage” bed that we brought over from PICU. Every time he went to sleep, we needed to put the bottom rails up and the top part down, so that if he were to wake up and stand up, he wouldn’t fall out of bed. I think this bed, plus being in a strange place, frightened Simon and he had a difficult time going to sleep, unless you were holding him.

This child had transitioned to a big boy bed at only fifteen months and loved to sleep, so this was a big change for us. He also cried when you would put him down because the noise of the bars going up would often wake him. This was incredibly frustrating, but I tried to soak up the times I could cuddle with him.

Thanks for reading! Part seven of the story will be continued this coming Monday!

If you missed Part One to the story, you can read it here.

The next day Simon seemed to be in a better mood which was probably because his brother came by to play. He also ate an entire bowl of oatmeal as we waited to be moved to rehab.

His strange eye roll behavior persisted though and it really started to concern me. I brought it up to the doctors (something I slightly regret now because it delay our release from PICU, but at the time we had no idea what was going on and since everything was new from his head injury, we questioned everything). The doctors were concerned for the possibility of seizures, so they told us that they were going to do an EEG to check for seizures. This was incredibly tough news because we were going to have to stay in the PICU another night (yet again) and it meant that I was going to have to keep Simon up all night, so that he’d be so sleep-deprived that he would sleep through the procedure in the morning (instead of putting him under).

To say that night was tough is an understatement. Simon was not a happy camper at not being allowed to sleep, as was I.

I did my best to entertain us both by watching tv shows, singing and dancing.

It was a long night.

In the morning, the woman came and Simon was finally allowed to go to sleep. She then proceeded to put fifty little electrodes with colorful wires on his head and covered them with a bandage. The procedure took about an hour.

The results came back and we were told that they showed brain movement consistent with his level of head trauma, which is also similar to seizures, but since they didn’t see him seizing, they were almost sure he wasn’t having seizures. Because of this, they weren’t going to put him on any new meds.

I was finally able to sleep, as soon as Simon slept peacefully and yet I couldn’t shut my brain off. I was literally so tired, that I couldn’t go to sleep. I watched shows on my phone and read magazines hoping that I would get drowsy, but I continued to be exhausted and wide awake, possibly with the excitement that we would FINALLY be moving to rehab. I couldn’t wait to move on with a “new normal”.

We were so thankful for all of the consistent care that we received in PICU, but at the same time, it’s a really difficult place to be. All around us were very sick kids, ranging from newborns to teenagers. On one side of us was a baby that had the saddest cry. I wanted so badly to be able to go over and hold it. On the other side was a teenage boy that had had excruciating leg pain and while waiting in the ER, he had a stroke and had to be put in a medically induced coma. Afterwards, they found out he had lymphoma. Because there were patients with such compromised immune systems, a limited amount of visitors were allowed at a time, only two to a room, including the parents (we broke this rule a lot). Plus, to get into the room, you had to call and be buzzed in, which was irritating, especially since you had to go outside to go to the bathroom. The doctors and nurses had rounds from 7-8 in the morning and evenings where they discussed the patients. Because they discussed confidential information, there was no coming in or going out during that hour. That meant you had to be in your room or out of the PICU entirely at that time, which was equally frustrating.

We waited all day, until they finally came and moved us that evening.

Our room at rehab was incredible. Because the building is new, only about a year old, the facilities were beautiful. We had a bathroom actually IN our room (let me clarify: our PICU room had a bathroom, but it was for patients only), a gigantic place to sleep and move around and our view was much nicer. And the best part was we could have visitors come and go as we please. Jesse went back to work, so I was able to stay with Simon for his first week of rehab.

When we checked in, our nurse mentioned that she was wondering if she would see us because she had been following our story on Facebook. I should tell you again how absolutely blown away we were by the amount of people that were praying for us and following Simon’s story. My amazing friend, Jenni, who started the Facebook page “Praying for Simon Frey”, told me that the day it was created she watched the number of people “like” it jump up about a hundred every hour! People can say what they want about social media, but I think it is a wonderful “prayer chain”, especially for the distance it covers.

The glue the technician used to put the electrodes on Simon’s head left his hair pretty sticky and crazy. I was able to take a shower with him, which was a little scary considering the last time he took a shower. That’s what got us into this mess. But, it was also freeing in a way because he was no longer hooked up to any more machines.

In the morning, on January 10th, after being naked for a week and a half, our little nudist was finally able to put some clothes on.

The nurses came in and brought us a mat to play on as well as to tell us our schedule for each day. Because we were in rehab, Simon would be getting a strict schedule of speech, physical and occupational therapy for an hour each day. When we went to physical therapy, they were really impressed with his balance and proprioception. He was already attempting to crawl and tried to go to a stand from the floor! I was overjoyed to see how strong Simon was and that things he knew before the accident were coming back to him automatically. They told us that it was a benefit that he was ahead physically before the accident because it is easier to relearn things you already know then to learn things for the first time.

Simon seemed much happier being in our new room with the ability to move around and explore. Plus, he was no longer hooked up to any machines. Ronald MacDonald also had a volunteer stylist that came to our room and shaved the rest of his hair off, since they only shaved half of it during the surgery. He wasn’t too happy about having anyone touch his head, but he looked SO much better after it was done.

Later that day, Simon was sitting on the floor, leaned forward and pushed to a stand. So amazing! We were even able to go outside and play around on the hospital playground. Simon has always been much happier to be outside.

The staff also brought us a high chair and Simon was able to feed himself, which was helpful since he’s a fiercely independent child.

Thanks for reading! The story will be continued this Wednesday.