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Simon’s Story: Part Six

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's before and after CT scans

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.

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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.

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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.

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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.

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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.

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

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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!

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