It was during a visit to the pediatrician last September when the curvature in my daughter's spine was discovered. X-rays estimated a 41 degree curve so we were referred to Shriners Hospitals for Children. How or why the curvature was not picked up during scoliosis screenings at school or during a multitude of athletic physicals I do not know. But here we were.
The Adventure Begins
Our first visit to Shriners was in January with Dr. Munish Gupta, an Orthopaedic surgeon with UC Davis Medical Center. His prognosis...surgery. It was so not what I wanted to hear, but I wasn’t entirely surprised.
The coming weeks would be spent having blood draws, pre-operative exams and tests to be certain my daughter was healthy enough for surgery.
My daughter's biggest concern and disappointment was the fact that she would not be able to play tennis. She will have to limit her activity for 6 months to a year. This meant she would not be able to join the tennis team her Senior year of high school. Meanwhile, my mind was racing and having trouble wrapping itself around the idea of her going under the knife. Spinal implant surgery. This was serious. A major surgery. All the things that could go wrong swirled through my head and created a tornado of anxiety. I was irritable and anxious and trying to keep my worries from my daughter. I felt stuck and depressed and almost everything else fell by the wayside.
Three weeks later the all-clear was given and a surgery date was set.
Day One: Surgery
We arrived at Shriners in the early morning hours of Thursday, March 20th. We met a myriad of people in the pre-op room and I hoped there wouldn't be a test because I would never remember who they all were. The one stand out was Ed, our intake nurse. He was hilarious! During times like these it's important to keep your sense of humor and he did a fabulous job helping us to keep ours.
The initial medications given by the anesthesiologist made Sweets giddy. These meds were supposed to relax my daughter, but I am now beginning to believe they are more for easing the anxiety of parents. She was laughing, and giggling, and behaving as though she was having the best time of her life. A member of the anesthesia team said, "Now is when you'll say your good-byes." Hard to do when the mere sound of your voice causes your child to ROTFLHHO (roll on the floor laughing her head off).
At 7:30 AM I let go of my daughter and began the long wait as the five hour surgery began to straighten my daughter's spine: Posterior Spinal Fusion. I was blessed to have my Aunt drive 100 miles to sit with me and keep my mind occupied until the surgeon came out and let us know that everything went well. By this time my husband had returned to the hospital. Only one of us was allowed to go see her in recovery so I high-tailed it back not knowing what to expect. She had three IVs, a Foley catheter (urinary) and a JD (surgical drain known as Jackson-Pratt Drain). I greeted my daughter with my usual "Hey Sweet Pea" and was immediately told not to talk to her. She was mumbling. The medical person tending to her spoke with me and explained to me that she was wanting water but couldn't have any.
Next she would be taken to the ICU.
Next she would be taken to the ICU.
For a place of healing, I was surprised by how noisy hospitals were. Particularly in the ICU. All the beeping, alarms and chatting nurses outside the door. It seemed that every time my daughter finally fell asleep someone would come in to move her, examine her or her breathing would become too shallow for the o2 sensor and the alarm would go off. A crying baby down the hall had my daughter whispering, “Shhhhhh” in her sleep. There was a cot made up for me, but I couldn't sleep. Oddly enough, I can't hear my alarm clock at home, but the slightest moan or whisper call from my daughter brought me to my feet in a heartbeat. It was a long, long night as would be the next five nights.
Day Two: Recovery Begins
The sun was out and light streamed in through the windows of my daughter's hospital room in the ICU. The doctors popped in and out. All was good. Unfortunately, she still couldn't have any water. She had to wait until her stomach "wakes up."
Mid morning, while she slept, I jetted home to change my clothes, brush my teeth and get a fresh cuppa. When I returned I noticed a pillow case bursting at the seams sitting on the chair. My daughter was awake and told me that the Child Life Specialists had brought it in for her. I said, "Oooo. Maybe we should open it up and see what they brought for you?" Sweets burst into tears and said, "No. I don't want to open it. I want to go hoooommmmme."
I have experienced a lot of dark moments in my life. Moments when I have felt helpless, alone and incapable. But nothing, and I mean nothing, has come close to the helplessness I felt in that moment. There is nothing worse than the helplessness you feel when your child is in pain and feels helpless and there is not a damn thing you can do about it.
Over the days to come we would share many of those moments, her just wanting to go home, as well as moments of frustration, anger, irritability, gratitude, togetherness, support, understanding and love. The coming days would be an emotional roller coaster ride for both of us. I had to agree with Sweets, "Surgery sucks."
Day Three: Up To The Floor
My daughter’s recovery was right on track despite the fact that the nurses didn’t always do what the doc told us would (or should) be done. We were quickly learning about hospital procedures and politics. Regardless, Sweets was moved out of ICU and was given a private room “on the floor.” My husband didn’t have to work the next day so we agreed he would stay with our daughter while I went home and got a full night's sleep. I would later learn that she'd asked her father to call me in the middle of the night because the nurses hadn't adjusted her right and she wanted me because I was the only one "who could do it right." I felt a twinge of guilt for not being there, but took comfort in knowing there were still some things only mom could do for her; my eye-rolling-teenage-daughter. :)
I returned first thing in the morning with a fresh cuppa for my husband; bruised and sore from a tumble I took down the stairs. I learned that Sweets had been approved for a clear liquid diet, although she didn't have much of an appetite for anything. For the rest of the day I watched the world from the window of the hospital room while my daughter faded in and out of sleep. She was finally up to watching some DVDs, although she ended up sleeping through most of them. In between we'd chit chat, I'd adjust her bed and pillows and she would be moved to a chair for some sitting time. Eventually the chair would be placed outside the door of her hospital room and she would be tasked with walking across the room to get to it. Progress.
Day Five: Ugh, Roommates
Just when we were beginning to get into the rhythm of our current existence; Sweets was moved again. They pushed her down the hall to a semi-private room. A crowded, cluttered, occupied room. I had already been struggling; unable to sleep much in these strange surroundings with strange people coming in and out at all hours. Now there was a constant presence of others. Now there was no privacy. We could hear every word they said to each other. Their drama, while similar to ours, played out behind the curtain. While we are both introverts who struggled with all the stimulation this adventure had given us, I also live with depression and anxiety. I had a full blown anxiety attack. I couldn’t hold back the tears. I was physically and emotionally exhausted and coming apart at the seams. Days of stimulation and holding back, trying to be strong, had taken their toll. I didn’t want to leave my daughter, but I also didn’t know how I could stay. Ultimately, I had to find a way to cope and will myself to breathe through the panic that was setting in. The tears stopped and I spent the night fighting sleep and wishing morning would come so I could have some coffee. On the upside, the Foley was removed and one by one my daughter's IVs were removed. While this was due mostly to their eventual failure, it felt like progress. It also meant she no longer had the magic green button that allowed her to self medicate the pain. The transition to oral meds was set to begin.
Day Six: Light at the End of the Tunnel
The morning exam brought good news. Doc said Sweets might be released the next day. We looked at each other with smiling eyes that said, "Yes!" There were just a few things that had to happen first. We both breathed a sigh of relief in hopes that she’d meet her milestones. Hospitals are all about passing gas and bowel movements. One down. One to go.
The physical therapists had been in to walk Sweets during the previous days with the aid of a wheel chair used as a walker. Now we took a few strolls of our own. We shared in our relief to get a break from our loud, chaotic roommates. I realized we were holding hands. We shared a giggle about it as I noted that I must commemorate and document this moment. We hadn’t held hands while walking since she was a little girl.
Our hopes for release were dashed when the doc came in and informed us it didn’t look like we’d be going home. One more night; which was the norm anyway. (Neither of us like being "normal.") Sweets did what she was supposed to do, but the surgical site was still draining more than he was comfortable with. However, by noon the surgeon's assistant came in and said he was releasing Sweets and we were going home. I wasn’t going to argue because I really, really, really wanted some good sleep. :)
He didn’t waste any time. He changed my daughter’s dressing, removed the drain and got the paperwork going. Meanwhile, I began gathering our things and took them down to the car.
It’s Good to be Home
In addition to a power outage, a false fire alarm, being across from the tub room where I could hear the burn babies scream as they were scrubbed and experiencing a missing child drill...my introverted brain struggled with all the noise and people. The mother in me struggled with feeling helpless and unable to comfort my daughter and relieve her pain. It was beyond exhausting. But there were also those tender moments of holding hands and my daughter reminding me that "you're a good mom", hearing her laugh or say something snarky because through all of this she maintained her sense of humor.
Four Weeks Later
Sweets is well on her way to recovery; sleeping through the night in her own bed, taking Tylenol every 8-9 hours and becoming more and more independent. It appears that the worst is over.