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Simon’s Story: Part Three

If you missed the beginning of the story, you can find Part One here.

Simon slept through the night and in the morning started to move and struggle against his intubation. This was a really good sign of brain function, but they needed to medicate him more to keep him still. We prayed for his temperature to stay low because it was rising a bit, as this would allow his metabolism to move slowly giving his brain a chance to rest and heal.

We sat and waited throughout the day (which felt like a year) and watched Simon increase in twitchiness. Watching him move more made us happy and lightened our hearts a bit. Later in the day, they took another CT scan just to be safe.

As it was Jesse’s turn to sleep in the room and the waiting room was packed with people, I decided to go home that night. My parents drove me and we stopped at my best friend, Katie’s house on the way. It was her 30th birthday and New Year’s Eve and I had a cupcake I wanted to deliver to her. Being an extrovert, it was refreshing to be surrounded by my close friends and to get away from the stress and waiting at the hospital.

It was comforting to sleep in my own bed, but also incredibly anxiety-inducing. I tried not to think about Simon and the events of the past two days. I also tried to not think about being away from him; instead, I tried to focus my attention on Liam.

We rushed back to the hospital early that morning, where we learned that the CT results were the same, which was good. His temperature was normal. They attempted to extubate him, but he panicked a little when they turned off the ventilation and breathed too quickly, so they turned the ventilation back on. This was discouraging because they wouldn’t be able to decrease his coma-inducing drugs until he was able to breath on his own. We wanted so badly to be able to see him wake up and know his mental state. The waiting combined with not knowing was incredibly stressful.

That day they worked hard to clear his airways. This included giving him some asthma medication to help treat the congestion he had, to hopefully speed up his progress towards extubation. It was at this time that he opened one eye really quickly. We were so excited to see this, which made us want to hold him so badly. We understood that he needed to rest to let his lungs heal, but our arms ached to hold our baby. The doctors told us that they needed to hear a “leak”, which would show them that his vocal area had decreased in swelling. I posted this prayer request on Facebook and only fifteen minutes later a nurse came in a heard a “leak” and another nurse told me that his lungs (while she listened through a stethoscope) sounded “really good”. We were blown away with the power of prayer and the power of our God. How good He was to us to listen to our specific needs and graciously give us tiny bits of hope for our son. We prayed that we would be a good witness to the doctors and nurses that surrounded us as we were practically roommates 24/7. We were incredibly thankful for the constant and continual care that Rady’s Chilren’s PICU gave us.

The next day, January 2nd, after we had rested (or as much as you can in a hospital room with loud beeping monitors), we met with our neurosurgeon. He read the latest CT scan and told us that there is a possibility of damage on the left side of his brain possibly caused by a stroke. This made sense as he was moving his right side a lot less than his left side (because each side of the brain controls the opposite side of the body). Some tests also came back that day which showed he had some sort of bacterial infection, which was possibly from a cold he had before the accident. They put him on antibiotics and he continued to cough up a lot of gunk, which showed that it was loosening in his lungs.

The doctors made the decision to put a PICC line in to give Simon more movement once he woke up. A PICC line is a “peripherally inserted central catheter”. A nurse is specially trained to use ultrasound to insert the thin tube/catheter in the periphery (usually an arm) that goes directly to the heart. It can deliver treatments directly to the bloodstream and is much more user friendly than an IV. Because they need a specific nurse to do the procedure, we had to wait for this nurse to come and she had a long list of patients ahead of us. We were informed that Simon wasn’t going to be able to get the PICC line in until the next day and so the extubation would have to be put off another day.

Simon opened his eye for a bit and looked at me worriedly, which is understandable as he was hooked up to five or more loud, beeping machines, in a room he didn’t recognize with people he didn’t know. I was able to lean down and hug him to comfort him, but I wanted more than anything in the world at that moment to scoop him up, run out of that hospital, and return to normal life. Hearing that the extubation was delayed yet again made me want to scream in frustration, but I tried to focus on the good things around us. I was thankful that 1-Simon was alive, 2-my husband was incredibly supportive and praying at this stressful time, 3-every nurse we had was incredibly friendly and hopeful for Simon’s future condition, 4-my family and friends who were amazingly helpful with Liam, our house, our dog, food, prayers, hugs, etc. and 5-Simon’s strong, spunky personality that made him such a fighter. This was unmistakably the longest week of my entire life.

It was brilliant timing that we were able to get a room at Ronald MacDonald that day, which allowed us to sleep in a bed in a quiet room, along with Liam and be within walking distance of Simon’s room. I am thankful for my family being so close and having a daily relationship with my kids already, so them staying at our house with Liam wasn’t too strange or different. But, you could tell that the stress of the past days’ events were getting to him. He acted out in anger towards everyone, had hysterical breakdowns and we took big steps backward with potty training. His poor belly was rejecting him and he had many accidents, most of them that were probably uncontrollable. The exhaustion and stress also caught up with me. I felt incredibly shaky and fatigued. I had been taking 1 or 2 Advil PMs every night since the accident to help me sleep and I believe that this, plus the constant stress, were breaking me down. Jesse was also having to keep up with his classwork (he is attending Ashford University and thankfully all his classes are online).

Thanks for reading! Read Part 4 on Wednesday.

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