Im having a terribly hard time writing today's post. I really don't want to look back on the last week, but I know I'll regret it if I don't write down my thoughts while they are fresh. Surgery morning was a beautiful day. We listened to Coras favorite music on the hour's ride to the hospital and tried to keep conversation light. "How about those Cubs??" It wasn't hard to see how scared we all were. We left all our over night bags in the car and headed in with one sweet, cuddly stuffed lamb for comfort. The hospital staff was nice, they always are! But honestly deep down inside I was screaming at every one of them. "Do you know how anxious this child is?? Do you understand her giggles and smiles are all pretend?? Can anyone understand our emotions right now??" Cora was so very brave, even though later she told me she was trying so hard not to vomit on the anesthesiologist. Then they took her from me. I just broke. My heart is with every parent, everywhere, that has to watch their precious child be wheeled away on the hospital bed into the unknown. We waited 4 hours. I visited with other parents in the waiting room, ate some crackers and watched stupid daytime television. Steve put on his headphones and checked out of the world for a while. We all cope differently, don't we? Here I wanted to hide my fears and be social, learn of others' stories that may be worse than ours and Steve found solice in his music. I was so glad he did. Then it was over. We got called back to see her. Everyone was happy and smiling and walking around doing their jobs and all I could see was my girl, crying her heart out and signing furiously to us. Yes, signing. She loves ASL and was trying so hard to communicate with us. She was still half asleep, so scared, and no one could understand a word of what she was trying to say. The nurse actually asked me if she was hearing impaired. I asked Cora to slow down and use finger spelling. Finally I could understand "ow ow ow ow ow". It was one of the hardest things I've ever watched, but on the other hand so adorable that her brain reverted to sign language when she needed to communicate. We got settled in her room. Unfortunately we were placed right next to the busiest nurses station. It was a high traffic, high energy hallway. Because if this, we kept the shades drawn, the lights off, and the door shut for the next 6 days. Our days consisted of beeping machines, blood pressure checks, pills after pills and sleep. Sleep so deep she snored. It was adorable and so comforting to me to know she was comfortable enough to rest. I slept on the couch for 5 nights. It wasn't bad. I watched a lot of movies, got to know the pellet ice machine really well, and cursed the poor cell phone coverage. We had so many lovely visitors. Each with a message of hope for Cora. Flowers, posters, cards and chocolate just poured in. She was so grateful for each and every act of love. This picture is especially tender to me. You can feel the love between Cora and her sweet uncle. The nurses told me spinal fusion was the most painful surgery performed at Primary Children's Hospital. I'm not sure if that brought me comfort or if that made me feel worse. Regardless, I did feel as if we were in good hands and they took care of our every need. All in all, the surgeon installed 18 screws, 2 titanium rods and lots and lots of cadaver bone. Ideally, the bone will fuse around the mechanics of it all and give her one, solid spine. She will be able to bend at the waist, which is a huge blessing! Soon, it was time for Cora to start moving. She did amazing. Sitting up, standing up, sitting in a chair for 30 minutes, walks to the nurses station, and finally a trip up and down stairs. I could see the pain in her eyes, but I could also see a look of courage, of "can-do", of strength even I couldn't understand. If you know my Cora Jane, you know she is always sitting cross legged, always stretching in weird positions or curling herself up to get comfy. Having to sit as straight as a board or lie flat on her back was terribly out of character for her. Discharge day came and we weren't ready. Her pain was through the roof and knowing that coming home would bring challenges we weren't prepared to face (can someone say 3 little brothers???) we agreed with the doctor to let her stay another night and day. I'm so glad we did. She was so nervous to go home. It literally took us 45 minutes to get Cora in the van to go home. She can't twist or bend her neck or back. So imagine trying to get into a minivan, turn yourself around , find a comfortable angle for your neck and back, and then shove all the 8 pillows we had with us around you, all while staying as stiff as a board. In hindsight, I probably should have had an ambulance transport her home. We hit rush hour traffic and it was dark and I HATE driving the freeway. Plus, honest to goodness I felt as if I had a car full of glass I was driving so gingerly!!! Every bump in the road, every man hole cover, every crack in the pavement, she felt. She cried the whole 70 minutes home. It was horrible for both of us. My incredible husband traveled in a separate car behind our van, protecting us from the rear. We all knew a rear end collision would be catastrophic. Steve tells me ironically, "I've got your back. I won't let another car hit you". What a stud.
Our triumphant return home consisted of 3 little brothers squealing to see Cora, massive amounts of balloons, flowers, signs, and well wishes in our yard, and a perfectly timed delivery of a hospital bed for her use. We're happy to be home, but we also completely understand that her journey of healing has only just begun.
1 Comment
Erin Apelu
11/18/2016 10:34:55 pm
Kirsty, I love this post. I too understand. Dylan had 4 surgeries in 12 months due to football. I hated seeing them roll him away. Recovery was the only time he would let me kiss, hug, and baby him. I am praying for Cora and for you!
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AuthorMy name is Kirsty. I am the mom of an amazingly courageous daugher with scoliosis. This is our story. Archives
June 2019
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