the longest seven hours of waiting.
/
If you missed the first one in this series, you'll have to read this to find out how we got in the ambulance through the worst 12 minutes of my life...
Confession: It's still hard for me to walk into Robbie's room after what happened two days ago.
As the paramedics - who were some of the kindest people I've ever met. more grace. - worked on my unresponsive boy, they asked questions. I answered them as I was prepared to, falling back once again on my training.
They each at different times commented on how well I was doing. I answered with a small nod, not able to put together the words to explain that I was not doing well inside but that I was simply doing what I had been trained to do. My demeanor was no indicator of how I felt but was simply what I knew it needed to be for my boy to get the care he needed.
As the team of responders worked on my son, I reminded them at least a half dozen times that my daughters were still sleeping. I couldn't bear for Jocelyn to wake up and see what I was seeing and then have to leave her to work through that with someone else.
I was thankful when they picked up my boy and carried him through the house, equally relieved that we were getting closer to the hospital with every step and made more comfortable by all those people leaving his bedroom. As I walked down the hall, Angie stood waiting with my shoes and sweater. Both she and Lee had grabbed clothing items and toys and electronics and chargers, all the things we'd like to have in the hospital. (If we ever have to do this again - please, no, Jesus - I'd grab a pillow of my own and change of underwear too. Those were the only things I missed.)
Helpless, I watched them strap him on the stretcher. Helpless, I tried to smile back at Angie so she wouldn't worry, and then immediately realized how weak and worrisome my smile must have looked. Helpless, I hugged my husband and then climbed in the ambulance next to my boy. Helpless, I listened to them quickly discuss the risks and benefits of medicating him right away to stop the seizure or waiting until the hospital so that the doctors there could observe what was happening unmedicated, with a better chance of having immediate answers.
Helpless, I watched them medicate him.
I nodded as they named the hospital. As we rode, I knew that I was living that Bible verse that talks about being unable to pray and the Holy Spirit having to intercede in groans. (Just looked it up. It's Romans 8:26.) I knew I would feel comforted by intercessors with skin on, so I texted our pastor and posted this request on Facebook:
I tried to remember the name of our friend who is an pediatric ER nurse at Wake Med. I could only remember the first sound and that it was unusual, so I texted another friend - who is the niece of that nurse - to ask for the name so I could ask for her when we arrived. I peppered the paramedic with questions about the unfamiliar words I had heard them use, knowing that I would hear those words again and that I would want to be able to decipher doctor-speak later, particularly in the moments when medical professionals talk about your case in the same room as if you don't understand their lingo.
I couldn't do much, but I could learn every bit of that lingo so I could advocate for my tiny patient later.
The paramedic who rode in the back with us was fabulous. As soon as Robbie was stable, she turned her attention to me, answering my questions and offering me water and making sure I was holding up as well as possible, given the circumstances.
I don't know her name, but I'm going to try to figure it out so that I can thank her. She embodied grace in her care for me and understanding that I felt less helpless with each answer.
I was startled when we stopped, realizing that an ambulance can get to the hospital far faster than I thought possible.
I'm not sure how we got from the ambulance to our room in the ER. That part is a blur. Once in the room, we had nearly a dozen people - nurses and doctors and residents and the EMTs and us - gathered around our boy. Soon, Lee and a person from check-in joined us. I signed several papers, and right now I can only remember what one of them was for.
It didn't matter what the papers said. I would have signed anything away to make this night better.
They took blood to check for things like electrolyte imbalances or low blood sugar or vitamin deficiencies. I knew, from his diet that day and daily Flintstones chewable, that those tests would probably show nothing.
Someone explained that we'd be leaving soon for a CT scan, as I expected. I knew what that meant: we're looking for a tumor or other mass of some kind. CT scans can also check for brain injuries or traumas, but Robbie had been with us all day without any bumps to the head or other accidents.
I've never prayed and hoped so much for idiopathic in my life.
You see, idiopathic is a word to hate. It's the fancy term in the medical establishment that says, "We have no answers, but it doesn't look good to write 'hell if we know' on the chart, so we came up with a big long word to say that."
But when you know that the most likely answers that night are "idiopathic" or "tumor," you know which one you want for your boy.
We went down to imaging, my boy on a bed and finally limp as they moved him to the CT scan bed but not reacting as they strapped his head into place. As they did the scan and moved him back to the bed and turned to return to the ER room, the nurse pushing Robbie on his bed and us walking beside him, I knew more than I wanted to know.
Back in the ER room, we sat in chairs next to Robbie's bed, our heads resting on the side rails as Lee prayed. I explained to him all that I knew, letting him know that the results would give us our next steps. If all we had was "idiopathic," he should go home. Jocelyn would be brokenhearted in the morning to know that the trip to Grandma and Grandpa's house was off, and she would be eaten up with anxiety if she realized that something was so wrong with her best friend, her brother, that both Mommy and Daddy had to be in the hospital with him. I let him know that - barring a tumor and probably even if it was one - all I would do is wait for him to wake up, knowing that the drug given to him by the paramedics would keep him asleep until morning. One of us needed sleep and needed to be there for the girls.
In the morning, we would know if we were just concerned about another seizure in the future or if we were in the midst of a much more life-altering reality, all based on whether or not he was himself when he woke up.
The CT scan came back normal: no tumor. The bloodwork came back: nothing abnormal. We'd be admitted and wait for a neurology consult and probably an EEG and an MRI, not knowing the schedule since we were in the wee hours of Thanksgiving Day.
As the resident explained the results and we were thankfully in the land of idiopathic, I kept staring at the logo on his lab coat: NC Children's Hospital. I spent most waking moments in college working on the UNC Dance Marathon, a student-run philanthropy serving the families there. I remember seeking donations by explaining the unexpected realities facing the kids and their parents if they ended up in the excellent care of that hospital. I heard the parents share their stories, and I never, ever, ever thought I'd see that lab coat from the perspective of a parent and not a volunteer.
When we were alone again, Lee jokingly asked if I knew the winning lotto numbers, given how accurate my predictions had been so far. We hugged and kissed. He set me up with the chargers I didn't even know we had, making sure I had my phone and his work tablet to connect me to both the outside world and Netflix. He left in search of caffeine and chocolate for me, a sweet gesture that each of the nurses would comment on in the coming hours.
As he left, I settled into the uncertain wait with my friends Gus, Shawn, and Juliet and my Thanksgiving Day feast of Reese's peanut butter cups and Diet Coke.
Part three to come tomorrow... but remember my spoiler yesterday: Robbie is himself again. Thank you, Jesus.
Confession: It's still hard for me to walk into Robbie's room after what happened two days ago.
As the paramedics - who were some of the kindest people I've ever met. more grace. - worked on my unresponsive boy, they asked questions. I answered them as I was prepared to, falling back once again on my training.
They each at different times commented on how well I was doing. I answered with a small nod, not able to put together the words to explain that I was not doing well inside but that I was simply doing what I had been trained to do. My demeanor was no indicator of how I felt but was simply what I knew it needed to be for my boy to get the care he needed.
As the team of responders worked on my son, I reminded them at least a half dozen times that my daughters were still sleeping. I couldn't bear for Jocelyn to wake up and see what I was seeing and then have to leave her to work through that with someone else.
I was thankful when they picked up my boy and carried him through the house, equally relieved that we were getting closer to the hospital with every step and made more comfortable by all those people leaving his bedroom. As I walked down the hall, Angie stood waiting with my shoes and sweater. Both she and Lee had grabbed clothing items and toys and electronics and chargers, all the things we'd like to have in the hospital. (If we ever have to do this again - please, no, Jesus - I'd grab a pillow of my own and change of underwear too. Those were the only things I missed.)
Helpless, I watched them strap him on the stretcher. Helpless, I tried to smile back at Angie so she wouldn't worry, and then immediately realized how weak and worrisome my smile must have looked. Helpless, I hugged my husband and then climbed in the ambulance next to my boy. Helpless, I listened to them quickly discuss the risks and benefits of medicating him right away to stop the seizure or waiting until the hospital so that the doctors there could observe what was happening unmedicated, with a better chance of having immediate answers.
Helpless, I watched them medicate him.
I nodded as they named the hospital. As we rode, I knew that I was living that Bible verse that talks about being unable to pray and the Holy Spirit having to intercede in groans. (Just looked it up. It's Romans 8:26.) I knew I would feel comforted by intercessors with skin on, so I texted our pastor and posted this request on Facebook:
I couldn't do much, but I could learn every bit of that lingo so I could advocate for my tiny patient later.
The paramedic who rode in the back with us was fabulous. As soon as Robbie was stable, she turned her attention to me, answering my questions and offering me water and making sure I was holding up as well as possible, given the circumstances.
I don't know her name, but I'm going to try to figure it out so that I can thank her. She embodied grace in her care for me and understanding that I felt less helpless with each answer.
I was startled when we stopped, realizing that an ambulance can get to the hospital far faster than I thought possible.
I'm not sure how we got from the ambulance to our room in the ER. That part is a blur. Once in the room, we had nearly a dozen people - nurses and doctors and residents and the EMTs and us - gathered around our boy. Soon, Lee and a person from check-in joined us. I signed several papers, and right now I can only remember what one of them was for.
It didn't matter what the papers said. I would have signed anything away to make this night better.
They took blood to check for things like electrolyte imbalances or low blood sugar or vitamin deficiencies. I knew, from his diet that day and daily Flintstones chewable, that those tests would probably show nothing.
Someone explained that we'd be leaving soon for a CT scan, as I expected. I knew what that meant: we're looking for a tumor or other mass of some kind. CT scans can also check for brain injuries or traumas, but Robbie had been with us all day without any bumps to the head or other accidents.
I've never prayed and hoped so much for idiopathic in my life.
You see, idiopathic is a word to hate. It's the fancy term in the medical establishment that says, "We have no answers, but it doesn't look good to write 'hell if we know' on the chart, so we came up with a big long word to say that."
But when you know that the most likely answers that night are "idiopathic" or "tumor," you know which one you want for your boy.
We went down to imaging, my boy on a bed and finally limp as they moved him to the CT scan bed but not reacting as they strapped his head into place. As they did the scan and moved him back to the bed and turned to return to the ER room, the nurse pushing Robbie on his bed and us walking beside him, I knew more than I wanted to know.
Back in the ER room, we sat in chairs next to Robbie's bed, our heads resting on the side rails as Lee prayed. I explained to him all that I knew, letting him know that the results would give us our next steps. If all we had was "idiopathic," he should go home. Jocelyn would be brokenhearted in the morning to know that the trip to Grandma and Grandpa's house was off, and she would be eaten up with anxiety if she realized that something was so wrong with her best friend, her brother, that both Mommy and Daddy had to be in the hospital with him. I let him know that - barring a tumor and probably even if it was one - all I would do is wait for him to wake up, knowing that the drug given to him by the paramedics would keep him asleep until morning. One of us needed sleep and needed to be there for the girls.
In the morning, we would know if we were just concerned about another seizure in the future or if we were in the midst of a much more life-altering reality, all based on whether or not he was himself when he woke up.
The CT scan came back normal: no tumor. The bloodwork came back: nothing abnormal. We'd be admitted and wait for a neurology consult and probably an EEG and an MRI, not knowing the schedule since we were in the wee hours of Thanksgiving Day.
As the resident explained the results and we were thankfully in the land of idiopathic, I kept staring at the logo on his lab coat: NC Children's Hospital. I spent most waking moments in college working on the UNC Dance Marathon, a student-run philanthropy serving the families there. I remember seeking donations by explaining the unexpected realities facing the kids and their parents if they ended up in the excellent care of that hospital. I heard the parents share their stories, and I never, ever, ever thought I'd see that lab coat from the perspective of a parent and not a volunteer.
When we were alone again, Lee jokingly asked if I knew the winning lotto numbers, given how accurate my predictions had been so far. We hugged and kissed. He set me up with the chargers I didn't even know we had, making sure I had my phone and his work tablet to connect me to both the outside world and Netflix. He left in search of caffeine and chocolate for me, a sweet gesture that each of the nurses would comment on in the coming hours.
As he left, I settled into the uncertain wait with my friends Gus, Shawn, and Juliet and my Thanksgiving Day feast of Reese's peanut butter cups and Diet Coke.
Part three to come tomorrow... but remember my spoiler yesterday: Robbie is himself again. Thank you, Jesus.