Originally posted on Just Playing House.
My son went to bed a normal boy. Excited that Santa was on his way. Hopeful that in the morning, he would find everything he wanted under the tree. He would have! I never would have guessed that 2 hours later, when he woke up sick, it would be the start of my worst nightmare.
Every waking moment I replay that night over and over in my mind.
He had a very low grade fever that afternoon (December 24th). I thought, “Figures we’d end up with a sick kid for the holiday”. About 3 PM he started complaining his ear hurt. Great, an ear infection! So we hurried to get him to urgent care before they closed at 6. My husband took him. Both ears were red and a little inflamed. He’d had a cough so they gave him a Z-pack.
They got home about 6:30. He had picked out Ginger Ale and cheese popcorn at Walgreens for a snack later. He really hadn’t eaten all day so they stopped and grabbed McDonald’s on the way home. Cameron was so excited that he got pancakes!
After dinner, his mood had perked up a bit. We took advantage and made our reindeer food. Reindeer have a very special place in our house, so we always make sure Santa’s reindeer have a special treat. Oatmeal and marshmallows for eating. Glitter added so they can see the sparkle and know where to land. We sprinkled it all through the front yard.
We had planned to do a webcam with my husband’s parents that evening. Let the kids open their gifts from them. I will never forget Cameron was mad at us! He didn’t want to open any presents early. He wanted to save them all for Christmas morning.
He gave in though, and I’m glad he did! The look of excitement on his face as he opened one of the video games he wanted. I wish I had been taking more pictures. He and Melia took turns opening Sienna’s presents. Then he asked if he could stay up and play his new game. I wish I had let him! It was already getting late, and we had so much to do before morning.
David joked that he would test the game out while Cameron slept tonight. Just to make sure it was going to work OK for him the next morning. Cameron asked if he could play in the morning before everyone else got up. I told him there was no way he was going to let us all sleep in on Christmas morning! He said it was OK. He wouldn’t bother us. We could sleep a little while. Then we’d open presents later. Right about 9 PM, Cameron announced he was tired and he was going to bed. Just like that. He picked up his games to take them with him, which made us chuckle. Off he went.
I didn’t get to tuck him in that night. He was asleep the moment his head hit the pillow.
We worked quickly that night to get Christmas ready. It was still early so we decided to watch a movie. I was trying to listen carefully for either of the big kids to get out of bed. I didn’t want them coming in to see the tree before morning.
It was 11 PM when I heard someone was up. Cameron was in his bathroom sick. I thought, “Great, that damn stomach bug is back.” The first words out of his mouth? “Has Santa been here yet?” I lied and told him no. I said it was still too early. As I cleaned up the bathroom, he jumped in the shower.
We got him settled on the couch. We were sitting at the table so we could be close. Every time he moved or made a sound, I would jump up to check on him and see if he was going to get sick. His fever had gone up to 101. We attempted Tylenol, but he couldn’t keep anything down.
By this time, it was almost 1 AM. I carried him into the bathroom. He was so tired and weak that he couldn’t walk on his own. I sat him down on the toilet and began cleaning him up. It was about this time that I noticed things began to be off. He had a couple of words that he began to slur. His response times were a little slower than usual. He told me everything was turning into legos. He couldn’t stand on his own so my husband had to hold him up in the shower.
My husband kept telling me that surely it was just because he was so tired. I knew he was, but it just didn’t make sense to me. He should have been able to rally more than he had. There was something more going on.
We got him settled back on the couch. Our watch resumed. I felt bad because every time he made a noise I would jump. Inevitably it would wake him up. He gave me a nasty look and said, “You just woke me up Mom. I was sleeping.”
He began asking for water because was so thirsty. We took his temperature. 103.5. It was time for the ER. We weren’t able to control his temperature. I was sure he was going to need an IV for medicine and fluids. It was 2:30 AM. My husband carried him to the car. We put him in the front seat with me. Got him buckled in. He held the bucket. On our way there he commented on the number of green lights we were hitting…how lucky we were. All I kept thinking was, we’d be OK once we got there.
Just as we were turning the corner into the ER, I asked him if we needed to take the bucket in with us. He said no. I asked him if he felt like he was going to be sick again. He said no. No sooner did he say it, he was throwing up again. I pulled up to the ER door, ran inside to grab a wheel chair, lifted him into it, and placed the bucket beside him. As I wheeled him in they took him right to the back to take his vitals. By the time I got back from parking the car, we were being wheeled back to a bed.
They again tried Tylenol. He still couldn’t keep it down. We started an IV. He barely flinched. In spite of the fluids, he kept asking for water because he was so thirsty. The tests began. First round of blood work. Chest X-rays. He had to sit on the side of his bed with me holding him up because he couldn’t do it on his own. I remember the technician asking me if he was always like this. I told her no. She agreed that he wasn’t acting normal, even given he was sick. She said she expected she’d be asked to bring him back for a CT scan next. She was right.
In the room, everyone that came in would ask him how he was feeling. He always responded with a weak, “Good.” I kept telling him that he needed to stop saying good. That he needed to tell us how he really felt so we could figure out what was wrong and fix it. He would then say, “I’m dizzy.” Nothing more.
The nurse brought him a little present. She told him he could open it now, or save it for when he felt a little better. He turned it around in his hands, inspecting it. He then told her he wanted to save it so he could open it on Christmas. She asked if he knew what day it was. We told him it was Christmas. It didn’t matter. He held onto that present.
He kept trying to fall asleep. It never lasted long. We had so many people in our room. It was a constant stream.
Test results started coming back. I don’t even know everything they were testing for. Most were normal. Some were a little strange. The medical mystery had begun.
It was about this time that I had my first feeling that he may not make it. I was so angry at myself for even thinking it. Refused to believe it. Kept saying we had to be close to figuring it out. Once we did, we’d be on the road to recovery.
The doctor came in and told me they wanted to admit him. We were going to be transported to Arnold Palmer Children’s Hospital. Our doctor was having regular conversations with their ICU doctor to make sure they were running the right tests and not missing anything. Our next test would be a spinal tap. In the middle of this conversation, Cameron sat up and asked me if I would help him. I asked what he needed. He asked if I would help buckle him. I said, “What?” He asked if I could help him get buckled in the car. I told him we weren’t in the car and asked if he knew where we were. He looked around and said yes…we were at the hospital. So I told him he didn’t need buckled. That he could just lay back and try to rest.
The doctor asked me if he had been doing this all night. I told him he had off and on.
As we waited, Cameron opened his eyes and looked at me. I will never forget the look in his eyes because it was nothing I had ever seen before! I asked him if he was OK. He said yes. I asked him if was scared. He said no. I said, “I love you.” He said, “I love you”. Then he closed his eyes. This was the last lucid moment I had with him! When I think about it, I really think he knew what was coming. This was his way of trying to make it OK for me.
By this time it was nearing 6 AM. Cameron had settled in and started to sleep a bit. I didn’t want to bother him. The doctor came in and we were preparing for the spinal tap. He attempted to wake Cameron and explain what we were going to do next. We couldn’t wake him. His eyes would open, but he would only stare off in the distance before closing again. The doctor and I both took turns shaking him, calling his name, trying anything to wake him. Nothing worked.
We were now being whisked into a larger room. There were at least a dozen doctors and nurses with us. Another IV was being started in his arm. He was being prepped for the spinal tap. My poor boy just lay lifeless on the bed. Like a little rag doll as they moved him around to the position they needed him in. I stood in the back of the room. Clear view to watch everything. Completely helpless.
It took forever for them to draw the fluid. Right after, I watched him seize a few times. A shift change had begun because we had new people coming into the room to get updates to take over. That was my mental realization it had to be around 7 AM. The ICU ambulance team had arrived from Arnold Palmer. They all kept telling me things were OK. His vitals were stable. He was “emergent”, but they were taking good care of him. The decision was made to intubate him for the ambulance ride. It was precautionary so that he didn’t stop breathing en route to the hospital. Again, it took forever!
I ran out to our car to leave some of our stuff. His clothes, minus the t-shirt they cut off of him. Our bucket.
As he as loaded into the back of the ambulance, the nurse that had been caring for us (Larissa) came to give me a hug. She told me she wanted me to bring him back to see her when this was all over and he was better. I promised I would. She had been amazing!
I had to ride in the front of the ambulance. The sound of sirens will never be the same!
By the time we got to Arnold Palmer, things had changed. As I climbed out of the ambulance, I was being told we were going right to a CT scan. His pupils had stopped responding on the ride and they had to do a couple of things (not sure what). We were supposed to be going to a room in their step down unit. Now, we were headed to ICU.
When we arrived at the room, there were already a handful of nurses and doctors to meet us. They immediately began evaluating him. Getting him hooked up. Again, I was standing in the background watching. Analyzing faces. Praying.
The doctor had her back to me. She took out her cell phone and called to get the CT results. She told him she would text the number down and asked him to pull the results as fast as he could. She then handed the phone to someone else in the room. Told her he would be calling back and to answer when he did. It wasn’t but a few minutes. I will never forget the look in her eyes. Intense sadness. She handed the phone to the doctor. They exchanged looks. I heard the doctor say, “How bad is it?” as she stepped out into the hall.
When she came back she sat down with me at the back of the room for a minute. She explained that his CT scan looked really bad. His brain was so swollen it had started to expand into his spinal cavity. That she was very concerned about everything she was seeing. That she had called in a neurosurgeon consult to look at his scans and see if there is anything that can be done.
She was careful not to give me any hope. Only facts. She was careful only to share a small portion of what she knew at that moment. She then told me they were going to need to start a central line in his femoral artery. It needed to be done in a sterile environment so I would have to leave the room.
As we exited the room and began walking down the hall to a waiting area, I started crying. It was the first time I let myself cry or feel any emotion. I was immediately mad at myself. I needed to stay in control because if there was any chance in hell that boy would open his eyes again, I needed to be right there to reassure him it was OK. There was no way I could let him see me a mess.
I’m not sure how long I was out of the room. It was at this time that I knew my husband needed to get to the hospital. I began trying to track down child care. I had family telling me they had decided they were coming. At first, I told them not to. In my heart I knew if they were coming, it meant things were really bad. I just kept telling them to wait because we didn’t even have a diagnosis yet.
I paced the hallway. I kept telling myself to be patient. Everything they had done earlier took ten times longer than expected. This would too. I was anxious to get back into that room.
When the 2 doctors came down the hall, their faces were blank. I knew I was about to get the news every parent feared! We sat down in a conference room. They closed the door. She asked me if there was family they could call. I told her my husband was on his way, but I wasn’t sure how far away he was. She asked if I wanted her to wait, or she could come back and talk to him when he arrived. I just wanted the update.
She explained again the horrible CT results. She told me the neurosurgeon reviewed all of his tests (including the normal CT scan we’d had just 3 hours before it). There was nothing he could do. The swelling was far too great. His brain was so injured from stroke, swelling, and infection. The areas of his brain that were impacted greatest were those that controlled things he needed to live (heart rate, breathing, etc.). She explained that even if he came out of this, the parts of him that made him Cameron would all be gone. It wasn’t until I asked her what the odds were that he’d wake up that it really set in. She told me she didn’t expect him to make it.
In that moment, my heart broke! How am I supposed to accept that? How am I supposed to even think about life without this little boy. It wasn’t fair!
They told me I was allowed to go back to the room. I couldn’t get to him fast enough. He was being put into isolation because we still didn’t know the cause. Everyone that came into the room had to wear gowns, hats, and masks…except me. The tests continued so they could try and find answers.
When David arrived, I had to tell him the news. We cried. The doctor came back by and explained it all again.
This was the first time I stopped to think about the girls at home. Poor Melia was still waiting for us to get home from the hospital so we could open Christmas presents. We struggled with what to do. We knew we had family jumping on planes to get to us. We knew we needed to be able to tell Melia before anyone else arrived, emotional.
It was so hard to leave Cameron at the hospital, alone. The only reason we did is because we knew if he was standing there, he would tell us to leave him and go home to the girls. So we did. We made the 45 minute drive home. I had no idea what we were going to do until we pulled into the driveway. The moment I saw her, I started crying! She asked me what was wrong and gave me a big hug.
I decided it was best we tell her first. Then we could let her decide what to do about Christmas. I explained how sick Cameron was. That his brain was sick. That he was sleeping and the doctors told us he wasn’t going to be able to wake up. That he wasn’t going to be coming home. She tried to ignore what I was saying and asked to open presents. So we did. She loved the 1-on-1 attention. Told me she was glad it was just her, Daddy, and I. I tried hard not to cry.
Shortly after we finished unwrapping, we told her we had to go back to the hospital. She was OK with that because she was having so much fun with my friend Penny. Penny was a godsend giving up her Christmas plans to watch the girls!
The drive back to the hospital took forever! No real updates when we got back. The medical mystery just seemed to grow. All they could tell us was encephalitis. That it was possibly a virus. They said we all likely had it. For the rest of us, it was a cold. For him, it attacked his brain. I can’t tell you how many people told me they have never seen deterioration this fast! They also told us they would continue searching for answers so we could get closure and know the actual cause.
David held onto hope. That he would open his eyes. That we’d find something or they would be able to do something. I kept telling him not to go there. Not that I didn’t want to have hope, but I told him they pretty much told me there wasn’t hope. I just stood beside his bed and held his hand. I don’t think David really understood until they let me get in bed with Cameron. We had brought Reindeer (his favorite). I tucked Reindeer into Cameron’s arm. Then I laid beside him in bed.
I will never forget the cold of his forehead on my lips.
The tests continued. No answers. We were told the process of determining brain death. Our doctor would perform a series of tests (checking for pupil response, reflexes, etc.) These could only be started after he had been admitted for 12-hours. We then had to wait another 12-hours and have a second doctor complete the same tests, with the same outcome. It was all so surreal. She told us we could delay that process as long as we wanted, but it was in our hands.
By 8:30 PM, our immediate family had all arrived.
We asked the doctor to begin her first round of testing as soon as she could, which was 10 PM. David and I both felt like delaying it was the wrong thing to do. We knew what the outcome was going to be. It wasn’t fair to him that he be kept alive by all these machines any longer than was necessary. We even had medicine increasing his blood pressure. It had been increased several times through the day because his rate kept dropping.
At 10:10, the doctor came in for the first round of brain activity tests. We were told we could stay in the room if we wanted. I wasn’t leaving! David had a hard time with it. For me, it didn’t matter. He wasn’t going to be alone. So I stood at the foot of the bed. Results were as expected, he was brain dead.
It was at this time that we asked the doctor what we could do. We couldn’t stand the thought of waiting another 12-hours to do it again. We asked if we could stop increasing the heart meds. She told us that legally they had to perform the second test. However, she wanted to consult with some other doctors to see what we could do medically.
She was back within a few minutes. She told us as long as we had 3 attending doctor’s in the room, in agreement, that we could do it on our own terms. She said they had the 3rd doctor already in their car on the way to the hospital.
As soon as everyone was there, we were given forms to sign. Then we were told it was on our timetable. To just let them know when we were ready. I didn’t want to wait, so we asked them to begin.
Slowly they began decreasing his heart meds. I’m really not sure who was in the room with us. I just laid in bed with him and held him. I kept whispering that it was OK. That I loved him and would miss him so much. He and I had a lot of conversations about death, so we had talked a lot about what we would do when we got to heaven. He always said he would meet up with Max, our dog. Then he would wait for me if he got there first.
I remember consciously watching his chest. I wanted to see him take his last breath. It was something I never wanted to forget. Then I just held him.
He passed at 12:19 on December 26th. He waited. You see, Christmas is also my birthday. I believe he waited so that it didn’t happen on my birthday.
From that moment forward, it seems the question I keep asking myself is “What do I do now?” I’m not sure if that will ever change. It was so incredibly hard to leave the room that night. Leave the hospital. Knowing I was leaving him laying in that bed. It just felt so final.
This last week was the hardest of my life. How do you move on from losing a child? Every thing I do is done because I think, “What would Cameron want/do?”
My favorite boy is gone….I’m still waiting for answers.