Tenleighs Troops

Haylee’s Halo Hospitalization Hacks:

Tenleigh & Baby Rapunzel at Boston Children’s Hospital.
Tenleigh “hanging” around in the Halo Gravity Traction.

Haylee’s Halo Hospitalization Hacks

Disclosure: The following information are things that personally helped our experience. Consult your surgeon about restrictions and what your child can do to get the most out of their time in Halo Gravity Traction.

  1. The halo looks more intimidating than it really is… The halo is very light. The children usually feel more comfortable in traction.
  2. Buy your child a nice pair of sneakers to wear in the halo walker.
  3. Always go down to your child’s level before talking to them. The halo creates a blind spot, and they will not be able to see you.
  4. You will need support! If you can have family members stay with you, I recommend it. If this is not feasible for your family, I recommend connecting with as many families inpatient or via support groups.
  5. The weight starts out light and increases daily. Transferring in and out of traction will eventually take multiple people to assist. Slow and Steady! You will literally hold them by their heads during transfers because you become their traction.
  6. Use lots of pillows for comfort! Tenleigh slept more comfortably on top of pillows.
  7. The child has to be at 30 degrees or greater at all times. If your child can tolerate the elevation at night, increase the incline to 35-40 degrees.
  8. Button-up pajamas are a must!
  9. Pin Care and Daily Showers are important, especially for girls! Place the wheelchair in the shower and use a handheld shower head. Hair can get wrapped around the pins and eventually fall out.
  10. The pin sites eventually heal and become unnoticeable, as long as there are no infections.
  11. To get the best results out of the halo, walk in the halo walker as much as possible! Gravity is your friend!
  12. The fastest way to recovery post-op is also walking! Every day, we would have Tenleigh repeat the following phrase “Walking and Water is the fastest way out of the ICU!” this helps with remembering through the post-anesthesia fog.
  13. Provide child’s mailing address to friends and family to receive care packages! These truly give everyone something to look forward to!
  14. Plan ahead if possible, especially lodging!
  15. Ask the social work or child life specialist at the hospital for gas cards, mortgage reimbursement, lodging, medication, meal, and parking assistance!
  16. If your child is school age, ask about tutoring services!
  17. Bring lots of snacks and ask for meal vouchers. Many hospitals will not allow food to ICU if the child is NPO (nothing by mouth).
  18. A towel, blanket, or warm-up IV buddy for IV comfort and back pain relief.
  19. Write your child’s name and label everything in clear Ziploc bags.
  20. Ask for all medical discussions to take place outside the room. This minimizes the child’s anxiety by taking away a lot of “what if” discussions.
  21. Request child life to be present for all procedures, pin care, or any situation where their presence can help decrease your child’s anxiety!
  22. Prepare yourself for the first couple days to be rough. Your child may experience low self-esteem at first but most children get their spirit back once the headache goes away, and they feel less pressure.
  23. Bling out their halo as soon as possible! Use gems or stickers that are approved for X-rays and that can get wet! This is a fun activity to help everyone get used to the halo!
  24. Use medical play for explanations.
  25. Decorate everything! This is going to be your temporary home, it will bring light to the hospitalization.
  26. Bring sentimental or comfort items for your child.
  27. Buy a Polaroid camera and allow your child to take pictures throughout the hospital for a “Halo Scrapbook.”
  28. Stay positive and celebrate every milestone!
  29. Your reaction will play a big role in your child’s self-esteem after the halo is placed.
  30. Have a “halo” placed on a doll during surgery to surprise them with post-op.
  31. Take breaks! During tutoring, therapies, activities, or ask for a child life specialist to sit with your child while you refuel. Avoid parent burn out.
  32. Take before and after pictures, you will appreciate comparing the final results!
  33. Take pictures of your child’s x-rays to also compare.
  34. Prepare your child prior to surgery and be honest. You can prepare your child by looking at pictures and watch videos of other children in halo traction. Encourage open conversations and emphasize the benefits of the halo. Some of those benefits are… increase appetite, weight gain, increased energy, straighter spine, less pressure, less pain, no restrictions, ability to perform new activities, etc.
    • Tenleigh was never able to run or skip due to the severity of her curvature, the halo allowed her to perform new movements comfortably! Celebrate and use this for motivation!
  35. For school-aged children, encourage conversations with their class-mates prior to the hospitalization. Once hospitalized, video chatting is a good way to keep your child connected with their peers.
    • Our first video chat consisted of an open Question & Answer from Tenleigh’s classmates and teachers! Overall, this helped normalize the halo and made the transition back to school smooth.
  36. At some point or another, your child may try to “hang” by their head. Ask your doctor if this is okay for your child. Tenleigh was allowed to do anything as long as she is comfortable. This was nerve-racking at first, but we eventually became used to it.
  37. Become a member of every single rewards program out there! Every dime counts!
  38. Hold a fundraiser or ask a friend/family member to host a benefit ahead of time if possible. Expenses add up quickly, especially if you are travelling out of state!
  39. Look into your states reimbursement programs for children with disabilities.
  40. GoFundMe is also a popular way to help with medical, lodging, leave of absence for work, and miscellaneous expenses or financial burdens you are expected to make.
  41. Have t-shirts and hoodies made to wear on surgery day! The medical staff will love it and it comes with unwritten perks like the circulating nurse and doctor being able to spot your family for updates.
    • “It takes a village to raise a child.” For us this was our actual Village (Pana, Illinois), find your “village” aka a support system!
  42. Get in the habit of journaling every day! Documenting everything can prevent a lot of stress and avoid confusions. Include daily updates, time, date, location, conversations and who they were with, good and bad moments of the day, concerns, questions, etc.
  43. Some doctors and nurse practitioners allow you to record their consultations, especially if you are travelling from a distance. Make sure you ask them first!
  44. Be aware of miscellaneous expenses you may be required to pay… tolls, higher sales tax, etc.
  45. Bring your jumbo size hygiene products! Trust me, you will use it and will appreciate not having to make the extra trip to the local grocery store.
  46. Try to associate doctor visits, hospitalizations, surgeries, etc. with positive memories.
  47. Before surgery, we would plan a fun activity like going to the zoo or the children’s museum to help with pre-surgery jitters.
  48. Make the day before surgery all about your child! We call it “Tenleigh’s fun day.” Allow your child to pick all the activities and meals for the day!
  49. The nurses can make or break your extended stay hospitalization. Respect your nurses and have open communication.
  50. However, if your nurse is not meeting your child’s needs, you can always ask the Charge Nurse for a different Nurse.
  51. Do not compare your child’s progress to others. The Halo Gravity Traction treatment plan is tailored for each individual patient.
  52. You are your child’s advocate! Do not be afraid to voice your concerns!
  53. Ask to keep your child’s halo after surgery!
  54. Hang in there, you can do it!

Tenleigh with Dr. John B. Emans & Staff

Please feel free to share your halo hospitalization hacks” with us

The Halo Gravity Traction Roller Coaster Ride.

Halo Family: Tenleigh, Tiffany, Bryce & James

Leading up to the Halo Gravity Traction Hospitalization: the long wait to the entrance.

Time spent in Halo Gravity Traction: Slowly creeping up the roller coaster.

The Night before the Halo is Removed: The peak/climax of the roller coaster ride.

Halo Removal Surgery: Accelerating at full-speed ahead, dropping straight down.

Recovery: The slow and (hopefully) smooth coast into the dock.

Tenleigh, Dad, MaMa, MiMi & PaPa Shrake before Surgery #25

You were given this life because you are strong enough to live it.

Rating: 5 out of 5.
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