With Christmas upon us, Cora's view has changed a bit. I'm kind of jealous, I love the Christmas tree lights and would truly enjoy laying next to them for a while. Her resting room/living room just feels so peaceful now.
Cora has had a rough few days. Her pain at times is unbearable. I don't feel any support from her surgeon's office. I will leave a message for the nurse and not receive a call back for days! Refilling her prescriptions has been a nightmare and we are now relying on leftover painkillers from Steve's surgery last spring. There's no therapy ordered, no follow up phone calls and no in-home nurse to come and care for her. I feel as if they rebuilt my child, patted her on the head, and sent her on her merry way. I'm very frustrated. She is bored off her rocker. She hasn't been able to walk farther than the mailbox or stand longer than 10 minutes for the shower. She would kill for a quick run to Target or a hot cocoa run to Starbucks. It's hard to concentrate on homework when she is doped up so much. However, she has been able to make up a couple missing assignments. Next week, the siblings go back to school, leaving us with each other and a very quiet house. We hope to get her up some more and tackle a bit more schoolwork. Maybe we will even get her some sunshine and fresh air. However, Cora is sleeping well at night. I do count that as a blessing! I haven't left her side. I've been sleeping on her floor for 2 and a half weeks. I'm really scared to leave her. Some nights she needs a listening ear, so I wipe the tears and try to comfort as best I can. Some nights we stay up late, giggling over movie quotes and dreaming about Christmas to come. Most nights I just tuck her in, smoothing down her crazy hair and kissing that beautiful forehead. It reminds me of her nights as a baby, me not wanting to leave her side...not trusting her to find peace the whole night through without me. Ive been reminded of my favorite nursery rhyme I would sing to my babies: Sleep my child and peace attend thee, All through the night. Guardian angels God will send thee, All through the night. Soft the drowsy hours are keeping, Hill and dale in slumber steeping. I my loving vigil keeping, All through the night. It's been two steps forward, one step back this past week. But at least that's progress! She is trying so hard to be brave. Thank you all for your visits and prayers. They mean so much.
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Today I read the news. I haven't had a lot of time to myself lately and I needed to catch up. Man, it was depressing! So many sad, sad stories. So many lost lives. So much anger. I refuse to add to that in this post. So today, I give you this : This is the face of triumph and courage. This is the face of learning how to do hard things. This is the face of the strongest 15 year old I know. Yesterday, I heard her singing. All alone, downstairs while she had her earbuds in. I sat down right there in the upstairs hallway, closed my eyes, and listened. At that point I think I took my first big breath in about 3 weeks. And I knew, it's all going to be okay. We've been home from the hospital one week. Honestly, It's been really hard. I've never seen a child of mine in such excruciating pain before. It's unbearable to watch. I've never had to juggle so many medicine schedules. 4-5 times a night I've had to wake her. I've never ignored the rest of my family this much before. Thank goodness Grandma is still here! I've never muttered so many prayers under my breath asking for strength to be given to someone. Each of those prayers have been heard. And I've never seen so much kindness and love spread around like it has been in our home this week. Cora is learning new things. Today, she showered. It was a very big deal. And then, she put her own shirt on! Last night, she actually joined us at the dinner table for a couple minutes and ate! Amazing feats. Every one of them. Especially because of Doctor's orders: NO bending, NO lifting, NO twisting. I challenge each of you to try that for an hour. It's almost impossible. Cora has had lots of visitors. It's so fun to evesdrop and hear their laughter. They have all brought sunshine into our home and sometimes fun gifts too. She is sleeping great at night. We are recognizing that as an amazing blessing. Night before last, she slept 16 hours straight! Trust me, I checked her breathing as much as if she was a newborn babe. All you moms know exactly what I'm talking about 😊 Another blessing has been this hospital bed, trapeze bar and an empty room to put it in. She has such a hard time getting comfortable, and this has helped immensely. The twins think every opportunity Cora's not in it is a chance to fold themselves up like a taco. Every day is different. Some are rotten. Some we cheer with little victories! Some days her lower back, or ribs are so sore, most days it's nerve pain in her shoulder. Some days, the little boys drive me insane and some days they are so sweet and helpful. But every day, EVERY ONE OF THEM, had shown me how much My Heavenly Father has strengthened and carried my Cora, myself, and my entire family through this. He loves each of us and gives us what we need ❤️
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. Tomorrow is Cora's spinal fusion. At 8:45am they will be grafting in cadaver bones and fusing her from T-3 to L-3. Titanium rods will be placed on each side of her spine and using at least 13 screws to hold that into place. Over time, the spine will fuse with the cadaver bone and screws and make one big, happy, straight spine. Today was a check list for me: 1. Get my amazing, selfless, hart-of-gold mother here and settled as my replacement for a week. Check 2. Deliver presents and well wishes to Cora from friends and neighbors. Make her feel very special and loved. Check 3. Give kisses and hugs to all my other children as I will be gone for a week with Cora. Make them also feel very special and loved. Check 4. Quick trip to Target to pick up last minute items. Arms Reach Extending Tool anyone??? Check 5. Run Cora up to Primary's for a final blood draw and lab work. Check 6. Make sure I get out for a walk and fresh air. Check 7. Watch my amazing husband give a heartfelt Priesthood blessing to my child and myself. In our Mormon religion, we believe men can hold the Power of God and be able to give blessings to others of health and comfort. This power has been used in our family many times during moments of need and has brought health, strength and peace to us all. Check 8. Breathe Check So very many people over the last few days have asked me how I am feeling. And especially how Cora is feeling. The answer has been spinning around in my mind for days. I'm not quite sure how to answer that. In a way, we're excited for the surgery. To see my sweet Cora in pain daily is hard. Its hard for her to sit for long and also hard for her to stand. She get sore very quickly and is constantly shifting positions and stretching herself out. Knowing she will be "fixed" brings us excitement. Knowing that after her recouperation, she will feel so much better is very much something to look forward to. This has been looming over us for months and it will be so nice to have it over and move on. We're nervous. There is alot of unknown with this surgery. I fear I didn't ask the doctor as many questions as I should have in the times we've had together. I have a bazillion questions that the internet isn't answering and I'm afraid we won't ever know the answers until we are in that exact position. I'm very much a "planner" and don't enjoy not knowing exactly how things will be. We're humbled. So many people, even from across the country, have reached out to me and my family. Cards, emails, phone calls, and gifts have been sent for Cora. Each item, each act of love has a special meaning and holds loads of comfort and love for my family. Many, many prayers and kind thoughts have been sent our way, each with a message of love and peace. It helps tremendously. But me? I'm very confused. Honestly, am I making too big of a deal about this??? People have had this surgery for decades. Did it seriously merit starting a blog?? People tell me everything will be okay, that I need to stop worrying. Am I drawing too much attention to our family, and instead should just keep it all to ourselves? Does someone need to pull me aside and shut me up?? I hate to cause a fuss. But, a little voice in the back of my head reminds me how helpful scoliosis blogs and vlogs were to our family when we first started this journey. If I can just help one person... This week will be full of running errands, buying last minute stuff (ie, makeup wipes because she can't bend over for months to wash her face and also extra pillows to surround herself with, OTC medicines to help with side effects of major surgery and all those new books and movies to keep her busy), getting her room ready, doctors visits, waiting for Grandma's relief to come, and more time than I can measure spent on my knees. Thank you for humoring me. Thank you for your comments and well wishes. I direct them all to Cora so she can tuck them in her pocket for the hard times. 3 days until surgery... One thing you may or may not know about me is that I tend to worry. Alot. I really can't help it.
What if my car veers over the edge of the bridge into the river below??? I'd better crack a window to make an easier get-away. What if that concrete pipe rolls off the back of the semi truck in front of my van??? I'd better switch lanes to be safer. What if this chicken really isn't baked all the way through and I end up poisoning my whole family??? I'd better cook it until it's disgustingly dry and tasteless. What if an active shooter shows up at my kids school today and this is the last time I ever get to pack a lunch for them?? I'd better put a love note in it. So, here I am, worrying...about all that can go wrong in Cora's upcoming surgery. And I'm trying my hardest to focus on all the precautions the Medical Center is taking to make sure things go smoothly. I found some of these precautions facinating and thought you might be interested: They will be using "intraoperative neurophysiological monitoring. IONM is a general term used to describe testing and monitoring of the nervous system- the brain, spinal cord, and nerves-during a surgery. IONM helps the medical team understand how the nervous system is working during surgery. This knowledge can increase the safety of the surgery, lowering the chance of complications like loss of movement, feeling, or hearing. IONM is done by a specially trained technician or doctor. This provider stays with the patient throughout the surgery. The provider's job is to set up the equipmetnt, connnect it to the patient, and to monitor the IONM readings throught the surgery. Another doctor, -a specialist such as a physiatrist or neurologist provides extra oversight during IONM. This doctor will also watch the waveform data from IONM, either from within the operating room or from another location" So basically they will be hooking her up to a machine at the wrists and ankles, the scalp, the ears, the leg and arm muscles and the sacral portion of the spinal cord. Then we watch and see... Another cool fact I learned about the surgery: Cora will not need a blood transfusion because they will be "recycling" her own blood. "To recycle the blood, a machine known as a cell saver is used to collect what a patient loses during surgery, rinse away unneeded fat and tissue, and then centrifuge and seperate the red cells, which are then returned to the patient." Wow. I feel so blessed to live in a day where my daughter can receive amazing medical care, close to home, with a renowned orthopedic surgeon. I also feel so blessed she will not have to have a brace, a body cast for months or total bed rest. We are told the day after surgery, they will sit her up. Day 3 she gets into a chair, day 4 she stands and day 5 she walks. As much as I will want to crawl into that hospital bed with her and hold her tight until she heals, I know it will be in everyone's best interest if I instead hold her hand and cheer her on as she takes that first step. So for the next 8 days, my mantra will be: Let go and let God. Let your faith be bigger than your fear. Trust in the Lord with all thine heart. Repeated 100 times a day |
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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