This shot of Ben and his sweet, sleepy smile belies the reality of the day it was taken, and certainly that of the day before. What's up with that crazy hair, you ask? Well, Ben's hair was still covered in sticky goop and red grease pencil immediately following an EEG at the hospital, where he prefers to go sans absolutely-pointless-at-any-age gown, thankyouverymuch. What? An EEG? At the hospital (or hostible, as John would have said until pretty recently)? Why? Well...that's a long story. Just don't say I didn't warn you.
Wednesday. Ben's speech therapist was on vacation, so I thought we might have a day to do whatever we pleased, but we had a meeting with the PTA president to attend instead. It was at her house, and Ben played with her kids and loved their dog, so it was still a treat to do something different. Later, at home, I thought about heading to the grocery, but something told me to just stay home and take it easy since John gets home early on Wednesdays. As I made that decision, I looked at Ben and realized that he looked very sleepy. It was early, so I quickly put him in the highchair to give him some lunch, dreaming of catching an hour to myself if I could get him down for a nap early. Well, darn if he didn't refuse every bite I tried to offer him. He did eat a few bites of Cheerios, but I soon realized he wasn't going to eat anything else. Figuring I'd missed the window, I told him to hold on while I stepped into the bathroom, and then I would take him upstairs for a nap.
Barely had I closed the door to the bathroom when I heard what sounded like choking. I ran back out and saw that Ben was vomiting, and that it was also coming out of his nose. As I grabbed the paper towels to catch and clean, I noticed that Ben was tilting his neck back. I remember thinking that was an odd position and that he must be very uncomfortable, so I gently leaned his head forward a little and wiped his nose and mouth. But then he didn't raise his head. Not even a little bit. Panic began to creep in, but I was still thinking, "Oh, gosh, I've never seen him so tired." As I lifted his chin, I quickly realized that he wasn't breathing. And then things went from bad to very bad to unimaginably horrifying.
As Ben's lack of breathing registered with me, in a millisecond, his mouth and the skin around his eyes began to turn blue. Of course I thought he was choking. I yanked him out of that highchair as fast as I could, also a millisecond. I ran over to the sink and tried to dislodge whatever I thought was stuck. Nothing. His entire body was limp and lifeless. I turned him to face me, and the blue was bluer. No breathing. Totally unconscious. Panic.
I grabbed the phone and dialed 911 as I continued to try to get a response from Ben. This moment was the most horrible moment I have ever endured. I recall with clarity thinking, "This can't be happening. My baby is dying right here in my arms. Why can't I fix him? What am I going to tell Landy? What am I going to tell John? How can I go on living without him?" I swear all those thoughts raced through my mind in one second flat. Thinking I needed to start CPR, I decided I needed someone to help me, so I started screaming my neighbor's name while I was still in my own house. I was operating on automatic pilot as instinct took over, and I darted out of my garage door, still screaming, "Renee! Renee! Renee!" All the while, I still had my phone in hand, not thinking I had connected with 911. As we reached my next door neighbor's sidewalk, Ben began to cry. I nearly dropped to my knees right then. I banged on Renee's door, still screaming, and she answered almost immediately. She took Ben from me and listened to me cry and talk all kinds of crazy, I'm sure. She was so calm. We decided, since Ben was conscious and breathing but lethargic, that she would drive us to Ben's pediatrician. She kept holding Ben as she told me that her sister-in-law, Kathy, could come over and get our kids off the bus. She called Kathy as I turned off my phone, and everything was better then. I really think we would all be better off if Renee were running FEMA. The construction workers across the street, to whom we formerly gave dirty looks every morning for parking their big ol' white vans right across from our driveways, raced over to ask if Ben was okay, if I was okay. They are now our best friends, and they have since even started parking in the lot. I love them. They may park in my driveway if they so wish.
I called Landy, who was having lunch with colleagues, and blubbered that I needed him to come home, and Ben, and home, and *sob*, Ben'sfine, Ben'sfine, home, *sob*.
As we were buckling Ben into his seat, up drove a Wake Forest police car. With two officers. One exited the car and told me, "We had a 911 call from this residence." As I began to explain about Ben and that I didn't realize I had connected, he also told me that it had been reported as a domestic disturbance. Um, oops? In hindsight, all the operator heard was, "RENEE! RENEE! RENEE!", a crying baby, and banging on a door. Uh, yeah. Oops. He suggested we go ahead and have EMS come to the house. I started to say, "Oh, no, that's okay, I've got it all under control." Because that's the kind of dumb stuff I usually say, of course. But I listened. I agreed. He called. Thank God.
Before I knew it, there were no fewer than eight large, sweaty men in our family room. Police officers, EMS workers, firemen. I think it was quite a spectacle out on the Drive... I don't know; I was squarely focused on Ben. Maybe .0005% of my attention was given to wondering if John would have a place to go after he got off the bus, and whether the bus driver would let him go with any of the gaggle of moms waiting just down the street. Mostly, could we get this logjam out of here before the bus came barreling down our street, past our home? This was not a scene I wanted John to witness.
Oxygen. Stretcher. Carseat on stretcher. Ambulance. Questions. I think at one point, a fireman climbed aboard the ambulance and asked me some questions about Ben. I don't even know what I said. He might have asked me for my credit card number and my high school locker combination, and I might have given him Landy's SSN and my children's combined birthweight (20 lb. 13 oz. That's correct. I have only two children. Yes, I know.). Ben's oxygen level steadily rose from 85 to 99, but that took longer than they liked. 85 is not good, y'all. I know this from plenty of experience with his respiratorily challenged brother, and I have never seen John's level drop below 89.
Landy met us at the WakeMed Children's ER. After all the tagging and registering, we waited to hear what tests would be performed on our sweet boy. It wasn't long before I took Ben to have two chest x-rays. He was a champ, probably because he was exhausted from the seizure, too sleepy and confused to resist, and soon we were back in our room. We had been there for a little over an hour, and Ben was happily snuggling on his Daddy's shoulder. Landy suddenly, urgently asked if Ben was gagging. Yes. Yes he was. I stuck my head out of the door and saw that nearly every doctor and nurse on the floor was next door to us, where a boy younger than Ben was coding. Yes, that was scary stuff. (You'll be relieved to know he eventually pulled through!) I was promptly stampeded by five nurses and one doctor, just as I turned to look at Ben's face and saw that same terrifying limpness as the blue set in around his eyes and mouth once again. Crap.
The second seizure was nearly identical to the first and was just as short-lived in actual time, but as any parent who has ever felt utterly helpless surely knows, the time seemed to stretch on endlessly. The very lovely doctor, who I suspect may have been an angel as I never saw her before nor after her time in the room with us, helped Ben through his seizure and reassured us all at once. There were so many people in the room that we couldn't get near him. We just stood near the door, holding on to each other and peering over shoulders. As Ben's seizure ended, that angel doctor made certain that mine was the first face he saw when he awakened. I needed that probably more than he did.
The medicine administration and tests came rapidly after that. IV inserted, monitoring tabs stuck here, there, and everywhere. I defy anyone to find a PulseOx (with the red lit dot that goes on your finger, or in this case, Ben's toe) that my son cannot rip right off and toss across the room. Go ahead... tape it, wrap it, glue it, staple it if you like. It's coming off, so good luck with all that. Blood cultures, Tylenol suppositories (which thankfully melt almost immediately), CT scan, spinal tap. That's right...spinal tap. And that crazy Dr. Doogie brought only one nurse with him to subdue Ben. Knowing that Ben needed to remain very still, I felt obliged to inform those fools that my son is very strong, much stronger than he appears to be. I got an, "Oh, don'tcha worry, honey, I got this." The second Ben tensed, I then got an, "OH, Mama, you better come over here and help me!" I swear. Why doesn't anyone listen to me? Don't you know what happens when you don't listen to me? That's right. Something bad. Oh, sorry... lecturing a six year old child of strong will occasionally carries over into other areas of my life. At any rate, I was the lucky person who won the chance to be face to face with Ben as a big, nasty needle of pain entered his spinal column. Awesome. He doesn't seem to be holding it against me, thank goodness.
I cannot describe the relief we felt upon learning, one by one, that each of these tests provided a negative result. That meant that Ben had no cardiac infection, no meningitis, no other nasty, horrible, fever-causing infection requiring an extended stay and a ten gallon bucket of broad spectrum antibiotics, IV style. Whatever the root of the problem was, it was probably minor and common. Because Ben has periventricular heterotopia (Or peventrical heliotoma, as our discharge nurse said. You know, whatever...), we do expect him to have seizures eventually, but not during the next ten years or so. His condition does give him a lower than average threshold for seizure activity, so I am just keeping my fingers crossed that he will remain healthy and we won't face any more episodes such as this. I also pledge to stop using my hand as a thermometer and to just go out and buy a real one, and I also intend to make Children's Motrin my best friend if I must. Because I don't ever want to do this again. Please.
I also cannot describe how sleeping in a hospital bed with a toddler can be so torturous yet so fulfilling. Maybe it was just because fewer than 12 hours prior, I had thought that Ben was gone. There he was, breathing and eating and sleeping and crying, snuggling his head close to mine, and backhanding like Ike Turner. I didn't mind. At around 2am, his nurse came to check on him, and I told her I was concerned about falling asleep and failing to prevent what I felt was the inevitable IV-rip-out. Not to worry! She had THE solution! Really! It never fails! She wrapped a newborn size diaper around Ben's right hand like a boxing glove, rendering it useless in his battle against everything attached to his body. Ben and I each slept in spurts, and we awakened for good at around 6:30. The good news was that the IV was still intact and all those monitors were still in place. The diaper glove was at the foot of the bed, and the PulseOx was on the floor. That's my boy.
After getting John off to school despite a fruitless search for his shoes (which were located 5 days later IN HIS CLOSET), Landy returned to the hospital bearing more interesting toys and Ben's very own bottle. He drank a full cow, and he also ate 3 little boxes of Cheerios. Good. IV out. Ben still needed his EEG, and then we would wait for the results and hope to go home after that. Ben has had an EEG before. Piece of cake! Smiling and laughing the entire time, falling asleep easily when he was supposed to, waking up happy. The rest of this was going to be pretty smooth sailing, yessirrrrr... Ehhh, notsomuch. The poor technician said that the entire procedure would take about an hour, but the Neurology Department very nearly sent out a search and rescue party as she remained in our room for the next 2 1/2 hours. Ben kicked, cried, screamed, and sweated so much that the nodes were falling off of his head faster than she could attach them. At some point, I think she figured it was good enough, wrapped his head in gauze, and started the readings. It had taken four adults to subdue Ben, and as we finished, we all backed away, licking our wounds and knowing that he could have taken out any one of us at any time. As we looked back at our precious little tyrant, we saw that he had transformed back into a precious, sleeping, exhausted baby boy.
We waited. Waited. Waited for another 7 hours before we were able to go home. Would you believe that the neurologist on call just happened to be Ben's very own neurologist, Dr. Rathke? He said that Ben's EEG was normal and didn't show anything that was unrelated to his PH. He prescribed a rescue medication to be used if Ben has another seizure, but we will not have to give him anti-seizure drugs. Not yet. Check back with me in 2018 or so. This time, what Ben had were complex febrile seizures.
Landy, Ben, and I arrived home at around 8:15 that night, John came home, and we all stayed up a little too late. We were nervous about putting Ben in his crib, closing the door, and leaving him alone. Rationally, I knew that Ben would be fine, and that if another seizure should occur, I was prepared. I checked on him every hour. When the matter is your child's health and well-being, there is no sense trying to be rational. Crazy, heart-bursting, overwhelming love is really all that counts.
We want to thank everyone who helped our family, including the emergency responders; all the doctors and nurses at WakeMed who worked with Ben; our neighbor Renee, who watched John, fed him, and just generally made everything better; our neighbor Ivy, who fed John supper and knew exactly what to do when he wasn't breathing well, and who would also know what to do if John ever ate anything he shouldn't (he didn't, but I like having that comfort when I can't be with him); our neighbor Tracy, who took the second shift from Ivy so that poor girl could get some sleep; our neighbor Amy, who made us a scrumptious supper; and all of our family and other friends and neighbors who called, emailed, or just prayed for Ben. Thank you so, so much.
