Tap, tap, tap.
I opened my eyes. Please have been part of my dream.
Tap, tap, tap again.
Dangit. That's an adult knock. Maybe B needs more suction catheters? Please let it be that.
I checked my phone. 2am. Half sighing, half groaning, I rolled out of bed and cracked the door.
"She's inconsolable and her heart rate is over 200. You need to come now."
I followed our nurse to the living room, running tachycardia causes through in my head. The normally pitch black room buzzed with stark lights and I could hear Avery's trach-muffled screams from down the hall. She was 4 days post-op for her decompression surgery, so I wasn't surprised that she would be cranky and restless through the night. The heart rate, however, was slightly more concerning. Her pulse ox monitor read 204.
Yeah, something is not right.
First things first, I checked Avery's soft spot. Still soft.
So, not hydrocephalus. That's good.
I rubbed my eyes. "Okay, tell me about her night", I asked while cradling her head in my hands, checking the newly acquired zipper incision about the length of my palm spanning the back of her head and neck. Just days earlier, her neurosurgeon had removed a chunk of skull and pieces of vertebrae compressing her brain stem. The only thing protecting the part of her body that regulates heart rate, respiratory rate, blood pressure, swallowing and oh-so-many other functions lay covered by mere muscles and layers of skin, recently sliced open and relying on stitches for protection.
I learned that she'd forcefully vomitted several times and had been restless. She was afebrile and not needing supplemental oxygen. All good signs (minus the vomit).
I mused for a moment, connecting the pieces of the symptom puzzle like I do every day.
She's been vomiting. Vomiting causes dehydration. Dehydration causes tachycardia. That would be easy enough. It would save me a drive to the Children's Hospital and LORD KNOWS I'm not driving this baby for an hour and a half with a heart rate like that.
I decided that a quick bolus of IV fluids was a good first effort and once in her car seat and solely under my care, Avery calmed, though her heart rate still soared.
At our local hospital, thanks to Avery's physical appearance and possession of a trached airway, we were taken to a room immediately and assessed. Having had several run-ins with this staff before, the attending physician came to me directly. I was thankful to skip the normal middle-man resident who would fumble over his words while trying to hide the fact that he had absolutely no clue where to even start with Avery. Medical school is no match for Avery and nothing about her is textbook anyway. We needed a seasoned professional and sometimes even those guys can't hack it.
I gave the attending a run-down of her medical history and the last 72 hrs (we had been seen in the emergency room at the Children's Hospital 2 days before for an aggressively draining seroma that had formed at her incision site- the seroma had been drained and additional stitches had been added). I told him that a CBC, chest X-ray and some IV fluids would be how he could help me. The team did exactly that.
Her heart rate trended down after the fluid, though she was still extremely hypertensive. Her WBC count came back 19,000 which concerned me, but the doctor felt confident that it was elevated due to a stress response. (The bonus of having Avery's blood drawn so frequently is that I'm very familiar with what certain numbers mean for her. I would accept a WBC of 13 as a stress response, but not 19.) Her chest x-ray was beautiful and her newly cropped up fever low enough to not be especially alarming (99.3 axillary).
After the goal amount of fluids had infused into her deeply sleeping body, I was released to take her home. I knew that she wasn't fine, but I also knew that the local hospital had maxed its capacity to help Avery and her heart rate did seem to be improving. They were assured that she was well enough, simply experiencing a bump on the road to recovery after such a major surgery.
Fast forward 5 hours, and I found myself in a different ED. The one hours from home. The one where Avery stood the best chance of being helped. Over the course of the day, her heart rate had refused to drop below 180 and she was difficult to rouse. The resident in front of me stood in stark contrast to the professionals at the country hospital I had frequented earlier. He moved with confidence as Avery lay in my arms. His eyes narrowed as he examined her. There was no great exchange of words between us as he seemed to be rushing. The last thing he did was lift her pinky from its resting spot on my hand and give it a little squeeze.
No color change.
"I'll be right back."
My stomach did a little flip flop when he was true to his word, returning with the attending physician only moments later. She moved a little faster than he as she did her own examine and stopped mid-listen, pulling the stethoscope from her ears.
"Is she always this color?"
I looked down, unsure of the relevance of the question and realized Avery's complexion had markedly sallowed since we had arrived.
"Umm, no? She's usual pink and happy and awake and, and..." I stopped to compose myself. It had been a long freaking day. It had been a long freaking week. Surgery. Recovery. 3 emergency department visits. 7.5 hours of driving time.
The attending did the same pinky trick.
"She's turning gray." Turning to her resident, the attending uttered with some force the words, "Start vancomycin, rocephin and get me a lactate NOW."
I knew what that meant. I knew what they were checking for. I knew where she suspected the infection to be and I knew that we were racing the clock. Avery's color continued to drain and her O2 began dipping as her blood became increasingly inefficient at pumping oxygenated blood to her organs, necessitating a ventilator. She had begun to circle the drain.
I reached for my phone. I knew I would want as many pictures of her as possible if she didn't live to see the morning, even if they were pictures of her dying. Secondly, I wanted to text my mom.
"Avery's gone over the cliff."
Three weeks later, I sat on my couch, pumping breastmilk and watching Grey's Anatomy. I had been watching A LOT of Grey's Anatomy. Avery was in the next room, reading books with her nurse, greatly recovered and thriving as the effects of the initial decompression surgery began to shine. We had never found an answer for what caused her sepsis, but 5 days of antibiotics had coaxed her back from the brink. She was doing better than ever, but I had rarely been worse.
We were home, together and moving forward with the promise of a full recovery, but I was in full retreat. I wasn't leaving the house; I was only eating to maintain my milk supply; and if someone had offered to let me sleep for every hour of the day, I would have taken them up on it.
I had reached burn-out. It's not every day that your child begins to drift away in your arms and you live in a terror-induced adrenaline frenzy for over a week. Normally a cheerio that can't be pushed down for long, there was a part of me that wanted to sit on that couch, licking my wounds forever, though I knew I would one day run out of Grey's Anatomy episodes. I still accomplished all the essential tasks for my daily life, but with much effort and little joy.
So, what next? I had some decisions to make. Had the hiccups of life with Avery beaten me? Had trauma hollowed me out for good?
First, I decided that it was okay, normal, HEALTHY even to feel the way I did. I normally pride myself on the ability to have a robot-esque lack of feelings, but this time I gave myself room to be in the "valley". It didn't mean I no longer had faith; it didn't mean I was weak; it didn't mean Jesus was disappointed in me. Burn-out meant I was human and needed a minute to rest and a strategy to recover.
Second, I didn't put any pressure on myself to feel normal again in any certain amount of time. Obviously, I didn't want to stay down any longer than I had to, but I purposely didn't want to cut short any healing that needed to happen. I shrugged off my own self-induced push for perfectionism, and let myself breathe.
Third, I intentionally sought out things and activities that fed my soul. If there's an inner balance of stress and emotional fuel, I purposely reached for things I loved to nourish my soul back to life. The same amount of stress was the there, the responsibilities the same, but when there was something I had to look forward to, I felt a little spark of joy. I got a massage, a pedicure, drank a LOT of delicious coffee, took a million pictures, listened to a million online sermons; read several books; watched every episode of Grey's Anatomy (😂); went on a few runs.
Lastly, I continued to put my family before myself. I refused to drag them down as I suffered. There were no emotional outbursts. If I allowed myself to cry in despair, I would do so by myself. No matter how I felt, I still got out of bed every day. I cooked and cleaned and folded. I oversaw homework. I remained involved. To me, the greatest failure wouldn't be experiencing burn-out, it would be forcing others to suffer alongside me. THAT I would regret. THAT would be a shame.
These days my family is in full bloom. The last couple of months have been good to us and I'm happy to report that Avery is rapidly catching up on all her milestones. Lolly is chatting up a storm and cracking us up non-stop with her quick, sassy wit (and shockingly good grasp of the English language). Macson is out of school for the summer and we are so enjoying his presence all day every day. I'm so fortunate to be a stay-at-home mom.
It's completely normal to hit a rut, especially after a hardship, but even following a happy event like a birth or graduation or completed project. It's fine to be briefly side-lined as you nurse a wound as long as you don't STAY THERE. Give yourself time and space to heal and recover and then keep moving. There is no trauma that can sideline you forever unless you let it. Don't let it.