Pediatric brain surgery. How do you actually even comprehend that? As a parent, how do you even begin to process it?
Exactly two months after Diagnosis Day, we were heading into brain surgery at Barrow Neurological Institute in Phoenix, Arizona. We went into prep 4 days before and spent the day doing scans and labs. We met with the anesthesiologist and I spoke with the nurses who would mostly be there the day of and got the lay of the land.
The night before surgery I was nervous, y’all. I barely slept and I KNOW she couldn’t either. I packed and re-packed. I overpacked and overpacked some more. You would swear we were moving in with the amount of stuff we had to load into my trunk.
My alarm went off at about 4 and I slowly rolled over to shut it off, silently wishing it was yesterday. I just wanted one more day. My husband got up without a word as if he had been awake most of the night, too. I went into the bathroom and he went down to the kitchen to start the coffee.
It was so quiet in the house. All 3 kids were still asleep and it was pitch black outside.
I slowly went through my morning motions in a haze of shock. It was almost like someone else was living this life. Like I was watching someone else drink the coffee and brush their teeth. I vaguely remember waking up Twin B and her sister waking up as well. I went in about 10 minutes before we left and woke my son to come say goodbye to his sister, and we all headed downstairs.
My husband loaded the car with all the bags while the girls hugged each other and my boy joined in. I hugged my boy and then Twin A, promising to text when we got there and Facetime during surgery and after. Twin B hugged my husband at the door before she went out to the car. These things all happened in a bit of slow-motion for me. I was definitely in a bit of shock and didn’t allow myself to get worked up.
Standing at the open door my husband reached out to me and it was all I could do to turn and walk to the car without falling apart. I just wanted to stay. I wanted to skip the surgery and stay home with my husband and kids. Just to pretend none of this was happening. More than anything, I wanted it to be yesterday.
We drove the 20 minutes to the hospital in the dark, making chit-chat and small talk along the way. Everything happened around me as if I were watching my life in a snow globe. Like I could see everything happening in a weird haze and the slightest bump could send us all flying.
We parked the car and dragged all our stuff in. This was during covid so once we were in there was no leaving and no one could come in to bring us things. Plus, nerves. We had way too much stuff.
We sat in pre-op, Twin B in her gown and her phone and me nervously fretting over silly things like work and reminding my husband that I took out the chicken for dinner. A frenzy of doctors and nurses whooshed in and out of the curtain as I watched the clock intently.
Anesthesiology came in and re-introduced himself to us saying he would be back in just a few minutes to bring her to the O.R. Suddenly my girl looked nervous. Nervous in a way I can’t quite describe. Fear…..no, that’s not it. Panic….not quite. Terror…..getting closer. As she became more and more nervous I pretended to become calmer and calmer.
I quietly mentioned my concern over my girl becoming hysterical when they came to take her and the good doctor assured me that he would be prepared and put something in her IV at the first sign of tears. He said if she’s having brain surgery there’s no sense in her being wheeled into the room in tears. He wasn’t wrong.
Side note: anesthesiologists are absolute rockstars and I will go to the mat on that one!
Sure enough, moments later he came to take her and the nurse who had been with us all morning was with him. He started moving her IV and bag around and making sure she was comfortable in her bed. My sweet girl instantly turned 3 again before my eyes. She frantically reached her hand out and I grabbed it, rushing to her side from across the small room. I looked her in the eye and lied with so much confidence I almost believed it.
I told her there is nothing to worry about and she is going to be just fine. Dr. Lawton is a highly sought-after world-renowned surgeon and he will fix her up, good as new in no time at all. She wasn’t buying it and the tears started. Of course, as soon as she cracked I followed and my eyes started to overflow. Tears spilled out onto her cheeks and the good doctor reached around and push a small amount of something (I probably should have asked what it was but…oh well) into her IV and just a few seconds later I remembered how much she had admired the earrings of her nurse. To distract her I asked her if she still wanted to ask him about them and she was just distracted enough to calm down.
The next moments are equal parts blur and burned into my brain forever. I told her I love her and would see her soon. I reminded to her get in a good nap for me and they whisked her away, the good doctor giving my arm a good squeeze as he asked her questions about school and cheer on the way out.
I must have stood in that room for a bit too long because a nurse came and asked me if I needed help getting our things out to the waiting room. I pulled myself together, texted Twin A an update, and gathered our things to head to the neurosurgery waiting room.
The Waiting is the Hardest Part
For the next 4.5 hours, I busied myself with work and updating my husband, Twin A, my brother, and sister-in-law who were at a hotel across the street so my girl could be nearby. Calls came in from the nurse to update me on progress. Everything was going well and they would call back in an hour. Repeat.
When Dr. Lawton and Dr. Shafron came in to let me know that the surgery was successful and they would be coming to get me after they had her settled into the recovery room, it took everything in me to not break down completely. Being alone for this type of surgery as a parent is completely overwhelming and I do NOT recommend it. 1 out of 5 stars, for real!
They came to get me and bring me to Twin B and I practically sprinted to her. The nurse pulled the curtain back for me. She looked so small and helpless. I was instantly taken back to her brief NICU stay all those years ago. The feelings of fear and anxiety flooded me once again.
She heard me come in and reached her little arm out for me. In all of my life I will never forget the feeling of relief that washed over me in that moment. She was awake. Surgery went well and she was awake.
I rushed in and told her that I had spoken to her sister and told her she was going to be OK. I told her that I promised to Facetime Twin A when we got to her room. It seemed to take every ounce of effort she had to speak but when she did I was stunned. She asked for my husband. Not her sister, not her brother, not her best friend. My husband. She just wanted to see him.
I obliged and we called him. She complained about blood on her hand as she reached to touch her incision. I obviously stopped her but it was a bit too late and boy was she mad there was blood on her fingers. Twin A and I got a good laugh at her expense and before we knew it, we were on our way to ICU for the night.
Officially that meant, she was on her way to the long road to recovery. Unofficially, it meant I could rest. Round-the-clock nursing meant I might get a wink of sleep for the first time in 2 months. And I did. On and off for the 2 nights we remained in the ICU. I slept. Not well and not for too long at a time. But I really slept. Her nurses were incredible and for the first time in months, I felt like someone else could be trusted to look after her all night. I don’t know that I’ve really felt that since those nights, but if the trade-off is brain surgery, I guess I just don’t sleep and that has to be OK, doesn’t it?