Wednesday, February 3, 6:00am
I woke up slowly, trying to determine if the sounds I heard were in my dream or real life. I heard Squeak crying, and shook the cobwebs out of my head. This was nothing out of the ordinary. Squeak always cries when he wakes up; why would today be any different?
As I entered in the semidarkness, I could see him sitting in the crib. He saw me enter and reached; his little arms extended up, hands open wide.
I pulled him out, and his crying turned to a whimper, then stopped.
That was when I noticed his breathing.
Instead of hiccupy breaths expected after a crying jag, his breathing was fast. Astonishingly fast. Like a dog, panting, one breath right on top of the other without a second of pause in between. His nostrils flared with each hurried intake, and I could feel his belly moving against my chest: in-out-in-out-in-out. I could tell he was feverish.
I shook loose a thread of panic and sat down in the nursing chair. Nursing always calms him. A bit of mommy milk will fix this, I thought. Breastmilk fixes everything!
A few minutes later, his breathing hadn’t slowed. I tried to take his pulse, but gave up immediately. His heart was racing so fast I couldn’t tell one heartbeat from the next.
I placed my fingers on his ribs, inside his onesie. I could feel the skin between them pulling in tightly with each breath he took.
The thread of panic returned, and grew larger.
I called for my husband.
“His breathing,” I told him. “Listen.”
Nathan was unfazed.
“The doctor from the ER two nights ago said this would happen with croup, and that nights would be the worst. Let’s sit him in the bathroom with a hot shower running,” Nathan said, turning toward the bathroom.
(Sidebar: Squeak had woken early Tuesday morning with a croupy cough and high-pitched, labored breathing sounds. We made a speedy trip to the ER, where they gave him a steroid shot and a racemic epinephrine breathing treatment. His oxygen levels normalized and we were sent home three hours later, good as new, with instructions of how to handle another attack.)
Nathan fired up the shower as I sat on the closed toilet in the dark, holding my panting baby, trying not to worry. After 20 minutes, his breathing hadn’t slowed. We put a hat on Squeak and he and Nathan stepped into the garage together while I made breakfast for Peanut.
A few minutes later, Nathan and Squeak returned. Still no change. Squeak’s face was flushed from the fever, which registered at 103.6º. Holy crap. His highest fever ever. My panic grew even more. We gave him a dose of ibuprofen and tried to figure out what to do.
I grabbed my phone and called the after-hours nurse line for our pediatrician’s office. I got the same nurse, Patty, who had sent us to the ER two nights earlier with croup.
Nurse Patty once again advised that we go to the emergency room, more forcefully than two days prior. I wasn’t certain. I already felt a bit foolish after having gone on Monday night at her suggestion, especially when the ER doctor said that croup-induced breathing trouble can be cured with a shower. It was hinted more than once that we didn’t need to be there, even though his oxygen saturation was in the 80s when we arrived (100% oxygen saturation is best, and anything below 90 is cause for alarm).
I called the nurse line again and asked to page the pediatrician on call. They told me to expect a call back within 20 minutes.
I was shaky and nervous and impatient, and didn’t like waiting. After 45 minutes, I gave up. Squeak and I bundled up and drove to the urgent care just a mile away. It was 7:30am.
We settled in an exam room, where they weighed him and took his temperature, which was down to 103.3º. The nurse put a pulse oximeter on his finger. He didn’t fight her at all, which was unlike him. His oxygen saturation was 88%. I knew that wasn’t good, but it wasn’t oh-my-god-freak-out bad, either.
The PA arrived a few minutes later. She did an exam, and finally, she listened to his breathing. After a moment, she stepped back and pointed to his stomach, moving rapidly in and out with each breath.
“I don’t like how he’s breathing,” she said gently. “I’m going to call my supervising physician and get his thoughts.”
The PA left.
Just then, I heard my husband’s voice out in the waiting room. He and Peanut had arrived, and the nurse showed them back to our room. I sat on the exam table with Squeak in my lap. He was sleepy, and, aside from his rapid breathing, wasn’t doing much.
“Okay,” the PA said, all business as she re-entered the exam room. “My supervising physician said you should go straight to the emergency room, but then he called back and suggested another epinephrine breathing treatment before you go.”
The nurse set up the nebulizer, complete with a little dinosaur face mask. Squeak hated it; he squirmed and cried, and I held his arms as the nurse kept the mask pressed to his mouth and nose. Sweat had broken out on his forehead and drops of it mixed with his tears.
When the treatment was done, the PA returned, adding a new wrinkle to the mix: “My supervising physician called again. He said that sometimes little ones can get these treatments and then nosedive, so he’d like you to go by ambulance.”
We were, once again, skeptical. Was an ambulance really necessary? Nathan asked me to call our regular pediatrician for advice.
The PA leaned against the wall, a sad look on her face. “You have a little guy here who’s having trouble breathing. If he’s going to stop breathing, would you rather that happen in the back of an ambulance or the back of your car?”
I was confused, scared, and didn’t know what to do. I called our pediatrician’s office and spoke with his nurse. I gave her a quick backstory, and she responded without hesitation: “If they are saying you should go by ambulance, then there’s probably good reason. Go by ambulance.”
“Okay, thank you,” I responded. I looked at the PA, who was watching me carefully. “Do it. Call the ambulance.”
She nodded to the nurse, who left the room to call 911. Nathan followed her with Peanut, planning to drop her at daycare and return in time to follow us in the ambulance.
I sat and waited, holding Squeak in my lap on the exam table. He’d turned groggy after the breathing treatment.
Suddenly, his head lolled forward. He went limp in my arms.
“What’s happening? What’s going on?” I implored, panicked.
The PA moved to his side. She put a hand on his back, and echoed the nurse, who said he was just tired, and fighting the breathing treatment had worn him out.
My motherly instincts were screaming that she was wrong. He’d just woken up from a full night’s sleep; no way this kid was tired. Something wasn’t right. I was supporting his head with my open palm, and his eyes were barely open.
I glanced at the pulse ox, and watched as Squeak’s oxygen saturation level dropped to 77%. The PA saw it too. She reacted quickly.
“Wake him up,” she said, an edge of hysteria in her voice. “Wake him up now.” She gave him a little shake.
“Buddy, buddy, wake up, come on, Squeak! Mommy’s here, mommy’s here,” I begged him. Finally his eyes opened a bit more. His eyes were cloudy. He was awake, but he wasn’t there.
I heard sirens in the distance.
Dazed, I sat there hugging my limp baby, his hot chest and back against my hands and torso. I wanted to burst into tears, but told myself to keep it together. This was not the moment to cry.
Soon after, the door opened and two burly EMTs pushed a stretcher inside.
The next few minutes are a blur. The EMTs strapped him into a little “baby harness.” Squeak didn’t even notice, he just blinked slowly.
They hooked him to a heart monitor, which registered a pulse of 167. I’d learn later that an 18-month-old should have a pulse of 100. His heart was working so hard.
Additional sensors measured his oxygen saturation (now in the 80% range) and respiration rate, which was 67. Normal is 25 to 35. That means he was breathing almost three times more than he should’ve been. Hyperventilating.
They put a blanket over his lap and wrapped a towel around his head to protect him from the cold wind outside. I walked beside the stretcher as they wheeled it out of the clinic and onto the sidewalk, where the ambulance waited, back doors yawning open.
The EMTs lifted the stretcher containing our tiny toddler into the back of the ambulance. I looked up and made eye contact with Nathan, who sat in his car, watching. I was terrified, and could tell from Nathan’s face that he was, too. Nathan said later that seeing his baby boy like that was one of the most helpless feelings he’s ever had.
The EMTs helped me into the ambulance and I sat next to Squeak. The older EMT, Jeff, sat in the back, while the other climbed into the driver’s seat.
Jeff called up to him: “We’re going to the university, okay? Let’s just go a nice easy three.”
I assumed that a “nice easy three” meant “nice and slow,” since it wasn’t a heart attack or stroke. To my surprise, the sirens roared to life.
I tried to appreciate the moment. I’d never been in an ambulance with its sirens on before, and even though I was having one of the worst parenting moments of my life, I couldn’t help but think that Squeak would be so mad when he learned about his ambulance ride. Running all the red lights is an adventure for a kid. Too bad he would have zero recollection of it. I snapped a quick picture of him, towels still wrapped around his head.
Jeff took his temperature a minute later. Up to 103.6º again. We took the towels and blankets off and stripped him down to just his diaper and a onesie.
When we arrived at the hospital, we were wheeled right into our own room in the ER. No waiting room for us; a pyrrhic victory.
“Mom, would you like to sit with him?” they asked me, nodding toward the gurney in the center of the room.
I jumped at the chance; “Yes, absolutely.”
I plopped down and they lifted him from the stretcher into my arms.
Nurse Holly took a history and hooked up all of his sensors. She was kind and gentle, and most of all, confident in what she was doing. I liked her immediately.
My husband came in a few minutes later; he couldn’t run red lights like we did. He also didn’t know where the ER was, and trusted Google Maps to tell him. Unfortunately, Google took him to the farthest point from the ER possible, meaning he had a five-minute walk after parking. Yay Google!
The first doctor, Dr. Schultz, came in and did an exam. He had glasses and floppy brown hair, like a bowl haircut gone wrong. He wanted an IV put in, and blood taken for a CBC and a host of other tests. He ordered a chest X-ray.
Holly and another nurse took on the challenge of starting an IV. They used topical lidocaine to numb his skin, which helped; he didn’t even jump when the needle went in. The first attempt failed when the vein collapsed a minute later. The second attempt, farther down his arm, went perfectly. They drew the blood they needed and started IV fluids for hydration.
Soon after, radiology came to get us for the chest X-ray, pushing the stretcher down the hallway to the X-ray room. Nathan donned the lead cape and took on the job of keeping Squeak calm. His fever was so high and he was so lethargic that it wasn’t much of a job. Squeak didn’t even fight it, meaning Nathan ended up just being there, holding his hand to give Squeak tactile knowledge he wasn’t alone.
When we returned to our room in the ER, Squeak cried a little and signaled for milk. I was encouraged by his wanting to nurse. Holly closed the door for privacy while I fed him. His latch was a little lazy, but he was getting fluids, and the best stuff on earth at that: mother’s milk.
He’d been nursing about 10 minutes when I realized he was burning up. Squeak came unlatched and sat up, then vomited milk all over himself, the blanket, and me. The alarm on his heart monitor started to go off. I looked over and saw his heart rate had jumped to 225. A blinking alert on the monitor said “TACHYCARDIA,” and an alarm began to sound. I’d watched enough of the TV show ‘ER’ to know that was very, very bad.
Nurse Holly rushed in and checked his temperature. She sucked in a breath.
I had to ask: “How bad is it? Do I even want to know?”
She shook her head. “No, you don’t want to know. It’s bad.” She drew up a dose of Tylenol to help the fever.
I whispered calm words in Squeak’s ear, trying to get his heart to slow. “Shhh, baby. Mommy’s here, it’s okay. It’s okay, I’m right here.”
I felt powerless. I had no idea what to do. I couldn’t fix this.
Dr. Schultz returned. “I’ve looked at his X-ray and I don’t see any sign of pneumonia, but he’s having a really tough time right now. He’s using his accessory muscles to breathe and frankly, he’s in no shape to go home. We’re going to admit him,” he explained.
We asked questions, and he explained that pediatrics was a little backed up and there wasn’t a bed for him up there yet, so we would be hanging out in the ER a while.
Nathan and I looked at each other. We were thinking the same thing, and I was glad when Nathan brought up the topic. “Okay, dumb guy question: should we cancel our flight tomorrow?”
We were on a 6:00am flight the next morning, headed for family vacation in California. It had been planned for months, but were both more than ready to call the whole thing off. Healthy baby was top priority.
Dr. Schultz didn’t miss a beat. “You have a child with a respiratory illness. Even if he wasn’t contagious, the last thing you’d want is for him to have trouble breathing when you’re in an airport or at 30,000 feet,” he explained. “Call off your trip.”
“No problem,” I assured him.
It was 12:45pm.
Nathan left for home to pack a bag for me and Squeak, and let the dog out before racing back. Holly brought some books for me to read to Squeak, and after he tired of those, he watched PBS Kids on my phone. Nothing much held his interest, though. He was irritable, but still lethargic.
Around 2:30pm, a tall woman with shoulder-length blonde hair entered the room. She moved quickly and efficiently, emanating confidence. She identified herself as Dr. Stone, and said she’d be Squeak’s doctor on the Pediatric Inpatient Unit. She did a full health history and exam, and listened carefully to his breathing with a stethoscope. I liked her right off the bat, too. There were a lot of likeable people at the hospital!
“I really think that left side sounds louder than the right,” she said. “I’m going to take another look at his chest X-ray for signs of pneumonia. I will check in with you upstairs after you get settled.”
Around 3:00pm, our bed was finally ready. Nathan had returned, so he came along as a nursing assistant escorted us up to the room where a large Stryker crib was set up in the middle of the room. Even though my ass was numb from the ER gurney, I felt bad putting him in the crib by himself. I’d been right there with him every step of the way so far, and it was odd to be anywhere other than by his side.
Squeak was antsy and more animated than he had been. His fever was under control alternating Motrin and Tylenol—by “under control,” I mean it was just 101º instead of 103º.
Luckily, Nathan thought to bring the iPad we had loaded up with movies for our now-cancelled trip. Squeak and I watched Inside Out and snuggled in the recliner. I could tell he didn’t feel great, but he was definitely more perky than he had been earlier.
Squeak wanted to get down and walk around, but between his IV and the pulse oximeter, his leash was short. I offered him Cheerios as a distraction. Surprisingly, he ate several handfuls. It was his first solid food all day. I was encouraged. Maybe he was already recovering?
Around 7:30pm, Squeak was showing signs of sleepiness. I suddenly realized I had done a crap job of making his hospital room environment home-like. We didn’t have any of his familiar objects, from his fuzzy blanket to his noise machine. I mentally prepared myself for a long night.
In a lucky break, he fell asleep in just a few minutes… but woke 45 minutes later. He cried for half an hour, and wouldn’t be soothed. Nothing consoled him, and he didn’t want to nurse. I held him, rubbed his back, and sang him a little song. Nothing worked.
Finally, he fell asleep again, only to wake 25 minutes later, inconsolable.
It went that way all night. Every time he’d fall asleep, an alarm would go off: “IV occluded” or “Cannot detect pulse.” He’d alligator roll and the wire and tubes would tangle hopelessly. His nurse and I spent half the night untangling him and really pissing him off.
The best sleep he got was between 3:00am and 6:00am, when he had two stretches of almost 90 minutes. I had climbed into the crib with him around 4:30am to nurse (he finally wanted to), and stayed there, lying on my side curled around him as he slept. I snoozed off and on, and was relieved when light started coming through the blinds at 6:30am.
Thursday, February 4
I texted Nathan bright and early: “I’m exhausted. Please come soon if you can.”
He was bringing Peanut with him, and I was dreading it. We had no choice—we had already used up our three days of child care that week, thinking we’d be on vacation Thursday/Friday.
Worse, we had no family we could call. My mother was in California (it was her we were supposed to visit there), my sisters both had to work, and my in-laws were on a cruise and couldn’t even be reached by phone until Saturday.
As a last ditch effort, I called Peanut’s daycare and asked if they could make an exception. “Of course she can come!” the director said. “Besides, you pay for 39 hours a week and you’ve only used 22. She can come today and tomorrow.”
I was so relieved; I’d forgotten that I elected to pay for a little extra “just in case” we needed the hours. Nathan dropped Peanut at daycare and pulled in to the hospital around 9:00am.
All morning, Squeak wasn’t acting like himself. At first I thought he was just tired after a night of fragmented sleep. I offered mommy milk several times, but he had no interest—extremely unusual for him. He shoved away the Cheerios I offered. His breathing was as fast as it had ever been, and his temperature was steadily climbing toward 103º again. On the monitor, I watched his heart rate inch up to around 185bpm. The only good news was his oxygen saturation, which was hanging out in the 90s—right where it should be.
Squeak sat placidly in my lap, watching Daniel Tiger on the iPad.
Several residents and med students came by that morning. Each one listened to his lungs, saying that this was par for the course—we were managing symptoms, making him comfortable, they said. “He will get worse before he gets better,” the doctors repeated.
By the time Dr. Stone came by for rounds, Squeak had taken a turn. He was lethargic and floppy. He barely responded to his name. He just sat there staring at the iPad like a zombie. For once, he didn’t care if it was Mom or Dad with him; it was like he didn’t even notice.
Dr. Stone told us that even if this was the normal course of a virus, he was getting sicker, and that worried her. She had a plan.
First, she ordered a blood gas to see if his lungs were effectively removing carbon dioxide. Because we were on day two of very little food, she would put in a feeding tube for nutrients, right to the top of his intestine (called a TP, or transpyloric, feeding tube). At the same time, he would start on low-flow heated and humidified oxygen through a nasal cannula. Because of the oxygen, he needed an NG tube to remove excess air from his stomach. (Many babies with a nasal cannula gulp the air, creating a bloated tummy.)
All these changes were a shock. I thought we were pushing through the worst of the symptoms just fine, but doc instead said he’s getting worse. Cue the panic.
I wish I could remove the next hour from my memory. He was fighting as much as he could in his weakened state. I was responsible for pinning his arms next to his ears while they threaded the first of two tubes up his nose and into his tummy. Next, the respiratory therapist came in to place the cannula. He cried, but couldn’t muster the energy to fight. He lay still while they attached the tubes to his face with clear stickers, trying to avoid securing stickers over the tips of his long eyelashes. There wasn’t a lot of real estate on his tiny cheeks.
After the tube, they did a blood draw. He let out a whimper when they poked his finger, but that was it. My heart was breaking.
Shortly afterward, I traded Nathan spots and he took over on sit-in-the-crib duty as I went home to rest and clean up. I was gone just three hours, but texted him repeatedly: “Update? How is buddy?”
His first photo text was of Squeak reclined on Daddy’s chest, sleeping peacefully, tubes snaking across his face. The second picture Squeak was sitting, with a washcloth draped over his head like an awkward hat.
“Fever,” Nathan explained.
I picked up Peanut from daycare and hurried back to the hospital with her.
When we entered the room, Peanut’s eyes grew wide. “What’s on him’s face?!” She wrinkled up her little nose and stared at her baby brother.
I climbed back into the crib to relieve Nathan. Squeak was so lethargic he didn’t even have it in him to swallow his saliva. Drool rolled out of his mouth and down his chin in a steady stream. I mopped his chest and chin with a washcloth every few minutes. The cloths on his head were there to help bring his fever down, which had spiked to 104º and was barely budging, even with regular Motrin and Tylenol.
His heart rate was scary high, in the 180s, and would spike when he got upset. He didn’t react to much. He kept falling asleep sitting up, forcing us to keep a hand firmly on each side of his rib cage—and sometimes on his head—to keep him from toppling over.
As night neared, a resident stopped in and added sensors to his chest to measure respiratory rate, heart rate, and pulse. It was just a precaution, she reassured me, so they could catch any blips quickly overnight. Peanut reached the limit of her patience quickly, and declared herself ready to go. Nathan got me situated with water and the iPad within arm’s reach, then the pair of them departed for home.
I was terrified to stay with Squeak all night in the shape he was in. I couldn’t nurse him because of the feeding and NG tubes, and I didn’t know how I was going to console him if he woke up crying.
At 7:00pm, my oldest sister called. I had been keeping her and the rest of my family updated by text. “I can be on the road in an hour, at at your house by ten,” she said. “I’ll stay with Peanut so Nathan can be at the hospital with you.”
I knew Nathan would say it wasn’t necessary. I called Nathan and told him about her offer.
“Nah,” he said, dismissing the idea. “I think we’re fine.”
I made up my mind: this was happening. “Everyone says we should let them help us right now. She’s my sister, and she can be here quickly. I need you here at the hospital. We’re doing it,” I informed him.
He didn’t argue. He knew better.
I called my sister back and told her to come. I was so relieved and grateful to have her help in that moment.
Around 7:00pm, I realized I hadn’t eaten since 11:00am, and tried to order food from the hospital cafeteria.
Nurse Molly, who was checking in on Squeak, had to break the bad news to me. “Because he’s on a feeding tube, you actually can’t order any food to the room,” she said.
I understood, even if I didn’t like it. The general public is not smart, and I wouldn’t put it past some idiots to try and feed their sick baby when the child isn’t supposed to have anything in its stomach.
Thankfully, Nurse Molly had a backup plan. She scrounged up a cheeseburger and Greek yogurt for me. It was the most unbelievable meal I’d ever eaten. I even posted on Facebook about it, marveling how something so simple (and probably frozen for a year before I ate it, lol) could taste so good when you were really, really hungry. (Little did I know that this post would trigger a bonanza of food the next day!)
At 9:00pm, I was surprised to see Dr. Stone enter the room. She’d been on duty since the early morning, and I’d long ago expected her to have gone home. Even with the mask on, I could see she was troubled.
She came to the side of the crib, stethoscope in hand. I was sitting inside, Squeak propped up between my legs. He had a cool cloth over his head, and was naked except for his diaper. A washcloth was tucked into the top of his diaper to catch the drool that streamed down his chin.
She listened intently to his lungs, moving the stethoscope around his chest and back. Dr. Stone pursed her lips and slung the stethoscope around her neck.
“I can’t go home without doing something. I’ve just got a nagging feeling. He’s really sick, and getting sicker,” she sighed.
I was alarmed. He was really sick, and getting sicker? This was news to me.
“I also can’t shake the thought that his left side is louder than his right. I looked for pneumonia when I first saw you in the ER, but there was nothing on X-ray. It can take a couple of days to show up, so I want to start antibiotics. The downside is that we might never know what we treated, if he does get better,” Dr. Stone said, looking to me for a reaction.
I nodded. “Do it. I don’t care if we never know what he’s got. I just want him to get better.”
She explained which antibiotic she’d start, Ceftriaxone, and that we’d know within 24 hours if it was working.
After she left, I marveled at how well the staff had kept us from being alarmed at his condition. I’m sure they all recognized how sick he was, that he was getting sicker, but they never once let on. At first I was upset, but then I realized I was grateful. There was nothing I could have done but panic. They saved us a lot of stress by keeping their cool as his symptoms worsened over the course of the day.
Squeak stayed up late, til nearly 10:00pm, watching Daniel Tiger on the iPad. He was so feverish and lethargic, I was afraid to let him sleep. I had these horrible visions in my head that he might not wake up. I didn’t push him.
Instead, when I noticed him falling asleep sitting up around 10:00pm, I turned on the noise machine. It was like Pavlov’s dogs: he closed his eyes and leaned back into my arms. I gently laid him back on a pillow, his fuzzy blanket over his feet. He hated to lie flat, so I knew it wouldn’t last long.
Nathan arrived at 10:30pm. We discovered that the recliner in Squeak’s room was worthless for snoozing; it made that squeaky plastic-on-plastic sound, like two balloons rubbing together, whenever someone sat in it. I took the first shift while Nathan went to the lounge to read. I attempted sleep on the pull-out couch, but it was a lost cause.
Between the alarms from disconnected/malfunctioning sensors and his own restlessness, he was up constantly. I soothed him as best as I could, but gave up and climbed into the crib early in the night. Nathan lowered the end of the crib so my feet could hang off the edge. It definitely wasn’t built for a 5’10” person to sleep, but thanks to the smart folks at Stryker, we could adjust it and stay close to our baby boy.
Side note: in the ER on Wednesday, I sat on the gurney with Squeak in my lap. We stayed that way for over six hours, until he was admitted to the Pediatric Inpatient Unit. When we arrived in his room, I saw the giant crib that would be his bed. Alarmed, I wanted to ask, “Where does the mommy go?!”
I waited about 12 hours that first night before I said screw it and climbed into the crib. I wanted to be close to him and he needed mommy’s touch. We spent most daytime hours in the crib with him on Thursday and Friday, too. I was worried that it was against the rules, but the nurses assured me that it was fine, and the crib could hold our weight.
Later that day, two med students visited. They laughed and mentioned that I was the first parent they’d ever seen in the crib—even after months of visiting patients. That night, a respiratory therapist said the same thing. Another nurse marveled that while she’d seen parents sit inside, we were the first ones she’d ever witnessed sleeping in the crib with their child.
I was, and still am, dumbfounded. Since the moment he was born, we’ve soothed our babies with touch. In the hospital, as Squeak napped fitfully with a fever so high he barely noticed the world around him, I wanted him to hear mommy’s or daddy’s heartbeat in his ear. I wanted my hands to be the first thing he felt when he reached out in the dark in an unfamiliar place. So what if a grown adult (or two) was sleeping in the crib? Staying out of the his little bed was not an option for us.
Because we were in the crib, we had a front row seat for the dreaded task of keeping him untangled. Every move he made crisscrossed his cords and tubes: a pulse ox on his toe (we called it his ‘Rudolph toe,’ since the monitor emanated a bright red light), IV in his arm, two feeding tubes, oxygen in his nose, and three sensors on his chest. Eight cords to keep straight. It was a nightmare.
Nurse Tammy was with us that night. Once when Squeak’s nose was overrun with snot, I called her in to suction him. He heard the sucker coming and started to squirm, but I held him as she began to suction the mucus from his nose so he could breathe. Suddenly I heard an insistent beep-beep-beep and an alarm started to blare from his monitor. His heart rate had jumped to 227, and the monitor said “TACHYCARDIA.”
“Stop, stop, stop!” I shouted, and at the same time Tammy realized what was happening. She immediately pulled the suction away and stepped back. I kissed his temples and held him close, taking care not to pull on any tubes, whispering calming words in his ear. “It’s okay, no more snot sucker, it’s gone, all done baby, all done. You did a good job, you did so well sweetheart.”
His heart rate slowed back to the 180s, but I wasn’t sure I could handle that again. I was scared too, since I knew he’d need more suction as the night went on.
Nurse Tammy was a fixture at his bedside that night. She came in to monitor his breathing often, and quickly responded to all of the alarms that Squeak’s kicking and rolling generated. Tammy helped me untangle him and get him into comfortable sleeping positions over and over. She was a godsend. They all were. Every single nurse we had treated us like royalty. I cannot count the number of times I was asked, “Can I get you anything?” It was a huge relief to feel so well taken care of.
At about 1:00am, Nathan took over in the crib so I could sleep. I woke around 4:00am to pump, since it had been 24 hours since he last nursed and I was getting uncomfortable. At 4:30am, Nathan and Squeak gave up on sleep and pulled up Inside Out on the iPad. They watched until Squeak fell asleep, and I took another crib shift around 5:00am until the sun came up a few hours later.
Friday, February 5, 2016
As the sun rose on another day in the hospital, we noticed signs that he was turning a corner. Squeak was a teensy bit more animated, in a way we couldn’t pinpoint, but both definitely noticed. He signed for milk around 5:00am, for the first time in more than 24 hours. His fever was closer to 102º than 103º (I never thought I’d wish for a 102º fever, but I was overjoyed), and his heart rate ever-so-slowly crept down to near 160bpm. Still far above the 100bpm that was normal, but nothing like the 180s we’d seen for two days. His respiration rate was also inching down, from 60 breaths per minute to 45-48 instead.
That was also the day of the Great Food Bonanza. One friend who was coming to the hospital for an appointment brought us bagels for breakfast. My boss and coworker brought us a King Cake (it was Mardi Gras week), and two other coworkers brought lunch from our favorite Thai restaurant.
One text I received said, “Lydia! The Kyle/Michael Food Delivery Service is bringing lunch for you today. Pick any restaurant downtown and tell us the time. It’s happening.” Had they simply said, “Let us know if you need anything,” I never would’ve suggested “Thai would be great for lunch!” I’d have felt like I was imposing. They made it easy to say exactly what we needed (and wanted), and I was so grateful. The food was even more helpful, since we were still on the hospital’s “No Food to the Room” list.
The night before, in the wee hours, I had a lightbulb moment; they were giving Squeak Pediasure through his feeding tube, but I had 8 ounces of breastmilk I’d pumped over the last day. I asked Nurse Molly if we could feed him some. She eagerly said yes, and as soon as she could, swapped out his Pediasure for warmed breastmilk. I was so happy that I didn’t even have to try to convince them to give him the milk. They wanted to. Yay for a provider who understands the wonders of breastmilk!
That afternoon, around 1:00pm, his fever broke. His respiration continued to ease downward, as did his heart rate. We were overjoyed. Yay, antibiotics!
He’d signed for milk two more times that day, so late that afternoon, they removed his NG tube (the one sucking air out) so he could nurse. He happily nursed several times over the course of the afternoon and evening.
Nathan ran home around 6:00pm to shower and let the dog out, while I settled in for another night at the hospital. He would join me after letting the dog out one last time, around 10:00pm.
As I waited for Nathan to arrive, two friends came to visit me. They peeked in on Squeak, sleeping peacefully, surrounded by monitors and beeping. I could see on their faces how sad it made them to see him so vulnerable. I was used to it by now, but every so often, when I saw the distress in a visitor’s face, it would threaten to overwhelm me.
I explained his vitals, and described what each number should be for a normal 18-month-old. The three of us retreated to the lounge to chat, using my friend’s phone as a makeshift baby monitor in case he woke up. After the last few days I’d endured, girlfriend time was just what I needed. And they brought me a cupcake. That was also what I needed.
Squeak had a good night’s sleep, even catching a few stretches of 2-3 hours. For me and Nathan, who were taking turns sleeping on the pull-out couch (at one point we both squeezed onto that twin-bed sized thing, I am still not sure how we managed), the restful night was a relief.
Saturday, February 6, 2016
We anxiously waited for Dr. Stone and the residents to arrive and tell us the plan for the day. He’d been feverless for over 20 hours and was itching his face constantly, ready for the tubes and oxygen to come out. Soon, Dr. Stone arrived and gave the green light for exactly that.
That left just two tubes—pulse ox and IV—and a few hours later, we asked if he could be unhooked from the pulse ox to visit the pediatrics playroom. Our nurse happily obliged.
Ten minutes later, a little blonde boy was running through the hallways pushing a play lawnmower, making engine noises. Rolling the IV stand in front of us, we attempted to keep up with our little guy, who was clearly feeling better.
Dr. Stone happened to walk past just as Squeak buzzed across the hallway in front of her.
“Is that Squeak?!” she said incredulously. We nodded.
“Does he need to be here?” she asked.
I was a little nervous to leave, but ultimately we decided she was right. We were ready to go home.
An hour later, our bags packed and prescriptions filled, we were ready to go. I carried Squeak to the car, Nathan beside me, his arms weighed down with bags (and a giant five-foot giraffe that three comedian buddies sent; it was awesome).
I couldn’t help but think about the families who had traversed these steps before me, leaving the hospital after their child was very sick. I recognized how lucky we were, and gave thanks to the gods for letting us walk out after just four days, holding our beautiful boy.
We don’t really know what he had. A respiratory virus (he tested negative for RSV, human metapneumovirus, and influenza, among many others), or bacterial pneumonia. Maybe both. We’ll never know, but honestly, I don’t care. He’s all better now.
I can unequivocally say that the first 48 hours of Squeak’s hospital stay were the most frightening I’d experienced as a parent. But they were also the most heartwarming. People I knew as mere acquaintances came out of the woodwork offering to help any way they could—giving extra breastmilk, letting our dog out, bringing food, watching Peanut —and even more folks sent gifts and notes of encouragement. It was the biggest warm fuzzy feeling to see our village circle the wagons around us. We’ve never felt more loved.
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