Thoughts, Tips and Planning Ahead
We appreciate your interest to help your child, (or others), in their journey with scoliosis. We want to help too!
Allison, our daughter, at age 10 was diagnosed during a routine doctor’s appointment with a 23 degree scoliosis curvature thoracic and 14 degree lumbar. She was fitted for a brace, initially committed to wearing it, but over time her enthusiasm tapered and she barely wore it at all. We were not overly concerned because she felt great, we saw no outward signs of her scoliosis, and along with our family's experience of scoliosis that never progressed to a point of concern, we thought everything was fine. 18 months quickly passed before we called her orthopedic doctor to schedule another follow up. We were interested to see if there were any changes, but really didn't expect there would be. They took new x-rays that revealed changes that shocked us. Allison, at now 13 years old, had scoliosis progression to 56 thoracic and 43 lumbar! At this point she now required spinal fusion surgery. After the shock wore off, we did our homework - and then some - on the subject of spinal fusion. Our journey as a family working through the stages of; finding out, reaching out, understanding, planning and supporting her through spinal fusion surgery was truly a bonding experience for us. Allison's spinal fusion was successuflly performed in Aug 2013.
Based on our experience, I want to reach out and share my thoughts, ideas and offer my 20/20 hindsight for your planning ahead.
- Especially if scoliosis runs in your family, be sure their pediatrician does scoliosis checks beginning at an early age.
- If your child has been diagnosed with scoliosis make sure you continue monitoring them for progression. The progression of scoliosis can affect children through their growth spurt. Don’t miss appointments, no matter how good they feel!
- If it is recommended they wear a brace - wear it! I know it is not always very comfortable or stylin' but a brace can help avoid further scoliosis progression and possible surgery in the future. * To help their brace feel more comfortable they could wear an undergarment. "Embraced In Comfort" www.EmbracedinComfort.com offers comfortable undergarments for scoliosis braces and more.
4. After all is said and done, if their doctor recommends spinal fusion surgery - it is not the end of the world. They will be fine. One of the hardest parts is the anticipation of the “not knowing”. Although it is hard, push aside those worries and use your energies towards planning positively and educating yourself on your situation.
- First and foremost think positive! Having a positive outlook will make the whole situation easier for everyone, and leads to a more positive outcome
- Educate yourself. Knowledge is power. There is a great book called "Scoliosis Surgery - The Definitive Patient's Reference" by David K Wolpert. My husband read and marked many pages for reference, highlighting questions to ask the doctors. It was a great help!
- Request a copy of your child’s current x-rays to bring to orthopedic surgeons in your area for second and third opinions. (This eliminates the need for additional unnecessary films).
- Once you’ve settled on your surgeon look into their background to confirm you made the right choice, which can be done easily on the web.
- Look into the hospitals they are affiliated with to perform the surgery. Choose a children's hospital if possible - it makes a difference in the care they receive.
- Once you have chosen your hospital, look on the web for its reviews. Visit the hospital in advance. Make sure it is child friendly and has a good reputation.
- Ask your orthopedic surgeon for a reference sheet to connect with children who have had spinal fusion surgery.
- Ask your orthopedic surgeon about banking a unit of blood for your child's surgery. Although most surgeons use a cell saver, reducing the need for any additional blood, my husband and I both banked a unit in the event it might be needed, (which it wasn't ). It was a win/win for us because my daughter did not need it, and we helped someone else who did. :)
5. Keep a notepad to write down questions to ask your doctor. I always tried to remember, writing them down made sure I asked everything I needed to at the appointments. Also ask your doctor if they have an email address you can have to ask the questions that you think of later. Here is a link for the questions we asked: http://kickincurves.org/Surgeon_Questions.pdf
6. TMI! It’s great to be informed, but too much unnecessary information can work the opposite, such as watching YouTube spinal fusion surgeries. (My daughter watched and wished she hadn’t). You need to know only what is necessary to plan ahead. It is your surgeon’s job to know how to perform spinal fusion surgery, and they do. Have faith.
7. Pre surgery treats– As the days approached closer to surgery, our daughter started to become a bit anxious. In order to turn that around, each day we gave her a small gift. She loved her little gifts so much she looked forward to what each day would bring, including the day of surgery where she opened a gift on the way to the hospital!
9. The night before surgery- we allowed her two best friends to sleep over (and come to the hospital with us in the morning), which totally refocused her thoughts. We made it a fun night and took them to karaoke. She had so much fun she didn’t have time to be nervous. Even going to the hospital they talked, laughed and made the trip to the hospital and the wait before surgery much more comfortable for her.
10. Things to bring to the hospital that will help before and after surgery;
- Your child's favorite music downloaded to their cell phone or iPod. Listening to music is soothing while they fall asleep before surgery, and helps them refocus after. Don’t forget the headphones! ;)
- Comfortable pj's that easily slip on and off and loose fitting so the back can be checked easily if necessary. It feels good to wear your own clothes as soon as you can!
- A body pillow. After surgery having a body pillow to pull up against and hold makes it comfortable for your child while positioned on their side. We got ours at walmart : http://www.walmart.com/ip/Chevron-Fur-Body-Pillow/23852294
- Their Favorite Chap Stick flavor and hand sanitizer! Their lips will be dry, especially at first, so this really helps. Your child will not be very mobile to go wash their hands so hand sanitzer of their favor scent is the perfect solution to sit at their bedside. (the hospital had their own pumps mounted in the room, but they were out of reach for her to conveniently use, and she hated the smell when she did)
- Shower gel or soap (better than the hospital bar soap).
- Closed heal slip on slippers or shoes to comfortably walk in.
- Pillows from home. More comfortable than the hospital pillows both for your child and yourself (if you will be sleeping over).
- A velcro bath cover wrap- we found this very helpful!! During your childs first few showers they will need your help because it is too tiring and hard for them to do alone (especially for hair washing). And for most kids, modesty is a must!! At first our daughter used a hospital towel to cover up, but it got heavy under water and a bit awkward. A great solution is a cover wrap which is much lighter and hands free because it securely velcro's in the front. You can probably buy a cover up locally, but here are two examples you can purchase online; For girls: http://www.amazon.com/Three-Cheers-Girls-Signs-Medium/dp/B00AZK19ZK/ref=sr_1_1?ie=UTF8&qid=1377871000&sr=8-1&keywords=velcro+bath+cover+up For guys: http://www.amazon.com/Cotton-Terry-Towel-Velcro-Pocket/dp/B00C2C1CTW/ref=sr_1_8?ie=UTF8&qid=1378653938&sr=8-8&keywords=velcro+bath+towel - Or if you prefer to use a regular towel, you might want to bring a larger one from home. The hospital towels are not that large.
- Check to see if your hospital offers music therapy. If your child likes listening to music, sings or plays an instrument - This is a great hospital perk up! On Allison’s 3rd day post op, we had a music therapist visit. She played guitar while Allison sang from her bed. This cheered her up so much that before the session ended, Allison was so motivated she walked to the hospital family room to play the piano and sing while the therapist played the guitar, (which was the first time she walked any distance). It was great!
- Parents – If possible in advance create an update blog or email blast for family and friends to keep them posted on your child's progress. It keeps them all in the loop of your child’s progress while in the hospital, and saves you from a ton of phone calls and extra emails. We updated our blog every day and included pictures of Allison’s progress. Everyone thoroughly appreciated it!
- FYI - You might want to mention to your family and friends that during your child’s hospital stay and recovery at home - if they can - send cards! There is a lot of value in receiving ”feel better soon” cards. Allison really looked forward to receiving cards each day and beamed any time one came in for her. They were absolutely the perfect pick-me-ups and made her feel very special, thought about and cared about every time she received one and saw it displayed! And afterwards you can make a great memory scrapbook with them too!
During the hospital stay, what to expect
- Coming out of surgery Allison was very sleepy as expected, and very thirsty. They are not allowed to drink anything for a several hours. In that time we put chap stick on her lips and used a mouth swab (the hospital provided) to moisten her mouth. We also got approval for ice chips a short while after - which she very much appreciated!!
- The most challenging of this process is 2nd day post op when your child will sit on the side of the bed, stand and walk 2 -steps to sit in the chair. The physical therapist assists but your words of encouragement will mean the most.
- About the 3rd day post op your child may feel more like walking the hall. And the 4th day feel stronger to walk a bit further. Find out where the game/fun room is so they can walk there if they up to it.
- For your child's first shower at the hospital be sure there is a shower chair for them. It is important they can sit during their first shower (which you will assist with).
- Rather than the hospital chairs in her room, Allison preferred sitting in a wheelchair after surgery because it has a softer back. The nurses let us keep one in her room!
- Check to see if your hospital has a craft & game cart they can offer your child during their stay. Ours did and Allison painted a sun catcher and a wooden snake. It gave her something to do and was fun!
- To break up the monotony, before Allison could walk much distance, we took her on a hospital tour with the wheelchair. She loved it! We took her to the cafe for a treat and found spots she could look out the windows for nice views. She thoroughly enjoyed getting out of her room and doing something!
Planning For Your Child’s Return Home From the Hospital
- Your child will need your assistance the first week, plan to take a few days off from work. The doctors want your child to walk and do most things on their own so they keep from feeling so stiff, (like a long car ride without stretching), but they will still need your help for many little things.
- To eliminate boredom, plan for things for your child to do while they recover – good books, movies, crafts. Craft stores are great places full of fun ideas! You can also check out www.pinterest.com for fun and smart do it yourself craft ideas.
- One of the complaints we heard from other children who had spinal fusion was missing friends and being lonely. With that in mind we encouraged her friends to visit and allowed our daughter to have sleepovers with her two best friends. She never skipped a beat with their friendships which kept her happy and occupied. I believe her good spirits really helped her recovery process. Within a week at home she had already started to slowly venture out on short walks, small errands, shopping trips and even out to eat!
- A comfortable shower chair that fits in your shower/tub is recommended for the first several showers at home because it will be difficult for your child to stand that long during their shower. If your insurance does not pay for a shower chair, pharmacies like Walgreen's has them for about $39.95. However, we just picked up an inexpensive lawn chair ($16) that sat right in the shower. It was perfect!
- Not necessary but helpful, is a shower wand. It will be helpful with your child's independent showering.
- Fluffy pillows... One of the best solutions we could offer our daughter for comfort (in a bed or in a chair) after her surgery was to prop her up with fluffy pillows on each side or behind her back, or both!
- Our daughter slept in our recliner the first few weeks at home. She felt reclining back, but not laying flat, offered her the most comfort. It was a nice transition from the hospital bed. With pillows propped on each side and under her legs, a small table beside her holding her bottled water, charged cell phone (to call us in the night if she needed help getting up), and television remote - what more could she ask for?!! lol
- I highly recommend using a medicine scheduler! The attached link is a great help in keeping track and timing of the medicines you’re giving your child at home. http://kickincurves.org/medication_scheduler.pdf It is also a great idea recording this information on the scheduler in the event you need to refer to it for your doctor.
- And keep your outlook & attitude...Positive, Positive, Postive!
I hope in sharing our experience, it helps with yours. =)
If you would like to share your experiences with us....we would love to hear from you!