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Category Archives: Simon’s Story

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.

Simon’s Story: Part Two

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

As I panicked in the car, my brain went a million miles a minute. “What if he dies? Renata will never forgive herself! Why did I insist on giving him a bath! This is all my fault!”

My mom dropped me off at Rady’s ER and I ran up to the receptionist and they quickly ushered me to the back. Simon’s ambulance hadn’t arrived yet, but the surgical team had already gathered and I was introduced to the hospital social worker. She was very kind and compassionate and asked me what happened. I relayed the details of that night. Throughout the night, she asked me about three more times, I assume to make sure there wasn’t any abuse involved.

When Simon’s ambulance arrived, they quickly wheeled him away to surgery and we followed the social worker to the waiting room. Because it was midnight by this time, the entire hospital was absolutely empty and incredibly quiet. My best friend Katie’s parents, Joni & Dave Hall, showed up to support us. They ended up staying the entire night and were incredibly supportive.

Dr. Meltzer, the neurosurgeon, came into the waiting room on his way to scrub in. He had just looked at the CT scans from Palomar and told us that it appeared that Simon cracked part of his temporal lobe when he fell and that bone knicked an artery in his head which was causing massive bleeding. Dr. Meltzer’s first objective was to stop the bleeding. Then, we would focus on getting Simon to survive the night. We told him that we were praying for him during surgery and he thanked us and continued into the OR.

For the next four hours, we waited to hear the results of the surgery. It’s interesting how one reacts when the life of a child hangs in the balance. My husband, who initially reacted in anger because of fear now shut down and slept (granted it was after midnight). I was exhausted, but could not sleep. I cried and prayed the same prayer over and over for God to guide the hands of the surgeon, for Simon’s life to be spared and for him to regain his normal mental and physical abilities. Because I work in special education in speech therapy, I have a knowledge of the brain and it’s functions. I think that that knowledge made it harder because I knew what could happen. I feared that Simon would not be able to walk or talk or would have decreased mental functioning. Honestly I feared this more than his not surviving the night. And then I prayed to God to relieve me of that fear of the unknown and trust Him for what may come.

A nurse came out before Dr. Meltzer and talked with us. She said the surgery went well and he was able to stop the bleeding. Then she spoke with me and allowed me to cry with her. She told me how her son has been disabled since birth and he leads a fairly normal life, including graduating school and moving out on his own. I’m not sure if this calmed my fears or enhanced them, but I was comforted by this kind woman, who, in a way, understood what I was going through.

The nurse told Jesse and me that the doctor would meet separately with us (I believe this is hospital policy to not violate privacy regulations). So, we went into a conference room. I can’t tell you how strange and quiet the hospital was. It was totally empty, except for a janitor and we were left in that tiny area to wait on the outcome of our son’s surgery. After awhile, Dr. Meltzer came in and stated that the surgery went as well as expected and continued to tell us how many times Simon was “almost to God”. He then emphasized again that we were going to try to “get him through the night” and see how he does in the morning. He also told us that the next 24 hours were crucial with an increased possibility for a stroke. Simon had lost more than half of his blood, but since he never bled out, it was all in his tiny head, causing intense pressure on his brain. Because they had to release this blood, Simon received two blood transfusions and the doctor removed part of his skull (they refer to it as a “bone flap”) to release pressure on Simon’s brain and allow his brain to move back into place as it decreased swelling.

After this conference, we went out to the waiting room and shared the news with my parents and the Halls. Then the nurse escorted us to the Pediatric Intensive Care Unit (PICU) where they had taken Simon. We were allowed to see him briefly before they ushered us out of the room and continued with his post-op and hook-up to the machines that would help sustain him through the night.

We had to go to the PICU waiting room and by this point, there was nothing left for us to do, but finally get some sleep. We hugged our amazing supporters before they left and then crashed on the plastic, hard couches. It’s amazing how quickly I crashed and how oblivious I was because I fell asleep halfway on a love seat with my legs draped over a coffee table, not noticing that right next to me was a full-length couch.

After a few hours rest, we made our way to Simon’s room. He was in an induced coma and intubated to help him breathe. His head was wrapped in a bandage and his sweet little face was black and blue, bruising caused by the pressure from the intense bleeding. We sat in his room, cried and stroked his hand. His vitals were stable and he was moving and twitching by himself. All of these things were good signs that he was recovering.

Later that day, they took Simon out of the PICU to get another CT scan. Sue Shepard, who is a cardiac surgery nurse at Rady’s and also practically family, came by to see us. She walked with me in the hall when they took him to get the scan. I remember sitting on the window ledge and bawling my eyes out as I waited. I cried because of the unknown and the possibility that my precious, strong-willed son would never return to me the same. I wept so much that day that I honestly wondered how my body was still producing tears.

The waiting that day was awful and this will go down in history as one of the longest days of my life. The CT scan results were read by Dr. Meltzer and he told us that he was happy with the results. He also said, “Simon isn’t out of the woods yet, but I am cautiously optimistic”. He was also able to differentiate the white and gray matter and that Simon’s brain had adjusted back to it’s original positioning. Because of this positive news, we were able to take a break and go get lunch. When we returned though, Simon’s blood pressure had elevated, his heart rate was high and he had a fever. We prayed very specific prayers for God to lower his temperature and slow his hear rate. I also prayed that we could be a witness to the nurses and doctors around us.

Simon continued to be heavily medicated, but the medical staff was trying to slowly wean him back to consciousness. The nurses told us that they were encouraged because Simon would move slightly when they messed with his intubation. Our hospital social worker had informed us of the Ronald MacDonald house across the street and in an effort to clear our heads, I insisted to Jesse that we should go take a shower, even though the thought of leaving Simon’s side was heart breaking. The house provided us with products for bathing and towels. We also were given a free meal. As hectic as things were at that moment, it was nice to be able to sit under the stars and eat with my husband, away from the chaos of the hospital. We returned to the hospital and I bunkered down in Simon’s room for the night. Although I did not end up sleeping very well because of the noise of the computers and constant motion of PICU, the nearness to Simon was nice.

To be continued next Monday. Thanks for reading.

Simon’s Story: Part One

I’ve decided to write Simon’s story down because a lot of people have asked me HOW I knew to take him to urgent care and certain details about what happened. I want to write it down to clarify some things, inform others and just to make sure to get it all down in writing before I forget it all, since most details are already slipping away. It’s hard to believe that it’s almost been a year since our family went through this difficult ordeal.

It was a pretty normal evening. As we were eating dinner, I mentioned to Jesse that we should give our boys, Liam and Simon, a bath before they went to bed. He stated that I didn’t have to since we had people coming over, but I insisted. Jesse had family in town and we planned on having them over for a game night.

As the boys were finishing bathing, my two sisters, Risa and Renata, showed up. They live close by and are at our house a lot. I noticed that there was only one towel; I went to the linen closet in the hallway to get another one as Renata picked Simon, our sixteen-month old, up with the remaining towel, setting him down on the bathroom floor to dry him off. As she adjusted the towel, he stepped forward with his still slightly wet feet and slipped so quickly, he wasn’t able to get his hands out to catch himself. He landed directly on his left side and Jesse was able to hear the crack sound (which we now know was his skull cracking) from the other room. Standing in the hall, I saw his little head hit the tile in the bathroom doorway. Simon immediately started bawling, which is normal for a kid who has just hit his head, plus he tends to be quite dramatic about any injury. I rushed and picked him up to comfort him. I tried to get him to calm down, showing him Elmo videos and asking him if he wanted a piece of candy, anything to try to break the hysterical crying/screaming fit, but he continued constantly for ten minutes. Then he started falling asleep and at this point I started to get worried.

Not being one to call 911 or visit the emergency room frequently, I looked to Jesse for what we should do. Since we were expecting guests at any minute, he told me to take him to Kaiser Urgent Care, which closed in the next twenty minutes. Risa drove with me in the back seat to keep Simon awake. Because things happened so quickly and are such a blur, I have no idea as to when/how we put a diaper and clothes on Simon.

When we got to urgent care, there was one other person in line in front of me. I bounced Simon on my hip to keep him awake. All of a sudden, he gagged and then threw up all the dinner he had just eaten a mere twenty minutes earlier. As soon as he threw up, I got extremely worried, knowing this was getting more serious as time went on. I started crying. So there I stood, crying, covered in puke, bouncing my child slipping into unconsciousness and trying to get my Kaiser card out to hand to the receptionist with shaky hands. She checked us in and we waited.

I walked around the waiting room, frequently taking him outside when he dry heaved twice more, but nothing else was in his little belly. Finally, after about twenty minutes, we finally got to go in. A male nurse in his forties sat with us and asked me various questions about the incident. At this point he told me to let Simon go to sleep stating that “keeping him awake is something you see in movies and if they are going to slip into a coma, they are going to slip into a coma and there’s nothing you can do.” After hearing Simon’s symptoms, he told me that Simon would be okay and passed me on to the physician’s assistant.

The PA again listened to Simon’s symptoms and told me that he sounded alright, but that she was concerned since he threw up and wanted to send us to Palomar Hospital for further observations and testing. I commented to her that I was concerned because of the head trauma and would like a CT scan. She agreed, and called an ambulance for us.

At this point, Risa drove my car home to Jesse and he joined me at Palomar. On the ride to the hospital. I wasn’t worried about our situation and joked with the paramedics. Simon was awake at this point and sat looking out the back window in a daze. He never smiled or attempted to talk and was very much not his “normal self”. When I look back on this moment, it kills me to think that my son was dying as I laughed with these two gentleman seemingly unconcerned.

When we got to Palomar, Simon started crying again, most likely because he was in his car seat, so I picked him up and held him and he quickly fell back asleep. This didn’t concern me too much at the time because by this time it was around 9 pm, which is late and after his bedtime. We waited for a half hour or so in the exam room before they took Simon for his CT scan. We returned to the exam room after the scan and soon after Dr. Hansen came in to discuss the results with us. He stated that he had the results and then was interrupted by a phone call and quickly exited the room. A nurse came in as he left and told us that they were going to move us to another room.

At this point, I figured the results showed nothing and we were being released. We followed her up to the front of the hospital to a much larger examination room. In this room, there was a large bed in the middle and a lot more room for machines, etc. As I lay Simon down on the bed, I overheard a nurse at the end of the bed comment to another nurse that the CT scan “showed blood on the brain”. I immediately blanched, felt weak and said to her, “We didn’t know that”. Noticing that I overheard her, she questioned, “Dr. Hansen didn’t give you the results?”

I shook my head “no” and quickly sat in a chair. Dr. Hansen came in at that point and told us that the CT scan showed massive bleeding and that Simon would require immediate surgery and that they were sending him down to Rady’s Children’s Hospital because they didn’t have a pediatric neurosurgeon at Palomar. The phone call that he had taken when he came to talk to us earlier had been from Rady’s trying to set up transport for Simon.

Being the inquisitive parent that I am, I asked if surgery was absolutely necessary. Dr. Hansen then stated that if Simon didn’t get surgery that it was “unlikely that he’d survive”. As soon as he said this, my body went into full shock. It’s amazing how as much as you want to hold it together, your body doesn’t always comply. In five minutes, Jesse & I made about four trips, individually, to the bathroom.

My parents arrived shortly after and we relayed what was going on, although I’m not quite sure we even understood. I remember them telling us that they needed to intubate Simon, in case anything happened during transport. We agreed and they began the procedure. As they did this, Simon woke up a little and I noticed that his left eye was very droopy, almost stroke-like. We waited for a life-flight to arrive, but apparently there was fog, so they proceeded to send an ambulance. As soon as the ambulance came, Jesse went with Simon and I drove with my mom down to the hospital in San Diego.

To be continued Wednesday. Thanks for reading.