Haylee’s Halo Hospitalization Hacks:

Tenleigh's Troops



Tenleighs Troops

Disclaimer: The content is NOT intended to be a substitute for professional medical advice, diagnosis, or treatment. ALWAYS seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition.


Platform: Raise awareness of spondylocostal dysostosis, klippel — feil syndrome, and thoracic insufficiency syndrome. FURTHERMORE, TENLEIGH’S TROOPS ALSO PROMOTES advocacy and support!


Haylee's Halo Hospitalization Hacks
Baby Rapunzel & TENLEIGH at Boston Children’s Hospital.

Hanging for Tenleigh's Halo.
“hanging” around in the Halo Gravity Traction.


DISCLAIMER: The following information is 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. haylee’s halo hospitalization hacks are listed below.


Haylee’s Halo Hospitalization Hacks:


  • The halo looks more intimidating than it is! It is very light and children usually feel more comfortable in traction.
  • Buy your child a nice pair of sneakers to wear in the halo walker.
  • 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.
  • A support system is a necessity! If it is NOT feasible to have family present, then connect with as many families inpatient or via support groups.

Discharged from Boston Children's Hospital after 39 days of halo traction.
Day #39 – Halo Gravity Traction Discharge!

Helpful Hacks:


  • Traction starts light and increases daily with weights. Transferring will eventually take multiple people to assist. Go slow and steady, you will hold them by their head when they are out of traction.
  • Use lots of pillows to provide comfort! Tenleigh slept more comfortably on top of pillows.
  • Your child will be required to stay at > 30 degrees at all times. If tolerated, increase the elevation to 35-40 degrees at night.
  • The only clothes you need to buy are button-up pajamas!
  • Pin care and daily showers are critical, especially for girls! Place the wheelchair in the shower and use the shower head to rinse. Hair can get wrapped around the pins and eventually fall out.
  • Additionally, pin sites eventually heal and become unnoticeable, as long as there are no infections.

Transferring Tenleigh out of her Halo Walker.
Mama & Mimi taking Tenleigh out of traction.

Halo Gravity-Traction:


  • Adding daily weights can cause your child some discomfort. We resolved this by adding the weights while Tenleigh was sleeping and gave her Motrin prior.
  • Listen to your child. Neck pain is one way to determine that your child is not tolerating traction. Our solution was switching to one pound per day instead of two.
  • To get the best results, use the halo walker as much as possible! Remember, gravity is your friend!
  • The fastest way to recovery 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.

Tenleigh and her favorite RN at Boston Children's Hospital.
#1 nurse Lindsey, tenleigh had a well-known nursing ranking system on 10NW!

Haylee’s Halo Hospitalization Hacks:


  • Provide a child’s mailing address to friends and family to receive care packages! Receiving mail truly gives everyone something to look forward to!
  • Ask a social worker or child life specialist at the hospital for the following:
    • Gas cards.
    • Mortgage reimbursement.
    • Lodging support.
    • Prescription assistance.
    • Meal vouchers.
    • Parking assistance.
    • Transportation resources – shuttle bus, Angels Flight East.
  • Plan ahead of time, especially for lodging!
  • Request tutoring services!
  • Keep a stash of snacks and ask for meal vouchers. Many hospitals will not allow food to ICU pods if the child is not allowed to eat.
  • To alleviate IV and back pain, cover their arm with a towel, blanket, or warm-up IV buddy.
  • Label everything with your child’s name and store it in clear Ziploc bags.

Haylee's Halo Hospitalization Hacks
Blinging out Tenleigh’s Halo.

Hospitalization Hints:


  • Request that all medical discussions take place outside the room. This minimizes the child’s anxiety by taking away a lot of what if discussions.
  • Have a child life specialist present for all procedures, including pin care. Their presence can help decrease your child’s anxiety!
  • Keep in mind, the first few days following the halo application may be rough. Some experience low self-esteem at first, but most children get their spirit back after the headache goes away.
  • A fun activity to help everyone get used to the halo is decorating it. Bling out with gems or stickers that are approved for X-rays and waterproof!

RN Ernesto and Tenleigh on night one after the halo was applied.
Night #1 following the Halo application.

Halo Gravity Traction Tips:


  • Use medical play for explanations regarding procedures.
  • Decorate the entire room! This is going to be your temporary home, it will lighten up the mood during the hospitalization.
  • Pack sentimental or comfort items for your child.
  • Buy a Polaroid camera and allow your child to take pictures throughout the hospital for a Halo Scrapbook.
  • Stay positive and celebrate every milestone!
  • The reaction you show will play a big role in your child’s self-esteem after the halo is placed.

Tim and Tenleigh at Boston Children's Hospital.
Tim & Tenleigh at Boston Children’s Hospital.

Haylee’s Helpful Hacks:


  • Have a “halo” placed on a doll during surgery to surprise them with post-op.
  • To avoid parent burn out, take breaks during tutoring, therapies, activities, or ask for a child life specialist to sit with your child while you refuel.
  • Prepare your child before surgery and be honest. You can do this by looking at pictures and watch videos of other children in halo traction.
  • Encourage open conversations and emphasize the benefits of the halo.
  • Take before and after pictures to compare the final results!
  • A list of benefits includes:
    • Increase appetite and energy.
    • Weight gain.
    • Straighter spine
    • Less pressure and pain.
    • The ability to perform a new movement comfortably due to no restrictions.

Tenleigh and Haylee with the Boston Red Sox.
The Boston Red Sox Meet & Greet at Boston Children’s Hospital.

Haylee’s Hacks:


  • Encourage conversations with their classmates before 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 class! Overall, this helped normalize the halo and eased the transition back to school.
  • At some point or another, your child may try to hang by their head. Discuss with 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.
  • Become a member of every single rewards program out there! Every penny counts!
  • 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 traveling out of state!

Queen Tenleigh during her departure parade at BCH.
Queen Tenleigh!

Haylee’s Halo Hospitalization Hacks:


  • Look into your state reimbursement programs for children with disabilities.
  • GoFundMe is also a popular way to help offset medical, lodging, leave of absence, and miscellaneous expenses you are expected to make.`
  • Have t-shirts and hoodies made to wear on surgery day! The medical staff loves it and it comes with unwritten perks!
    • An example would be, the circulating nurse and doctor being able to spot your family for updates.
  • It takes a village to raise a child. Find your village aka a support system!

Haylee, Lee, Tenleigh, Ailsa, and Chris at Boston Children's Hospital.
Chris, Ailsa, Tenleigh, Lee, & Tenleigh

Hospitalization Hacks:


  • Get in the habit of journaling every day! Documenting everything can prevent a lot of stress and avoid confusion.
    • Include the following, daily updates, time, date, location, conversations, and who they were with, good and bad moments of the day, concerns, questions, etc.
  • Some doctors and nurse practitioners will allow you to record their consultations, especially if you are traveling from a distance. Make sure you ask permission first!
  • Be aware of miscellaneous expenses you may be required to pay… tolls, higher sales tax, etc.
  • Go ahead and pack your jumbo size hygiene products! Trust me, you will use it and appreciate not having to make the extra trip to the local grocery store.

Haylee's Halo Hospitalization Hacks
Laurel (Boston Children’s Hospital Child-Life Specialist) helping Tenleigh during pin care!

Final Halo Hacks:


  • Try to associate the doctor’s visits and hospitalizations with positive memories.
  • To help with pre-surgery jitters, we plan a fun activity, like going to the zoo.
  • Allow your child to pick out all the meals and activities for the entire day before surgery!
  • The nurses can make or break your extended stay hospitalization. Respect your nurses and have open communication.
  • However, if your nurse is not meeting your child’s needs, ask the charge nurse for a different nurse.
  • Do NOT compare your child’s progress to others. The Halo Gravity- Traction treatment plan is tailored to each patient.
  • YOU are your child’s advocate! Do NOT be afraid to voice your concerns!
  • Ask to keep your child’s HALO after it is removed.

HANG in there, we got your BACK!


Tenleigh, Dr. Emans, and his staff at the halo follow up appointment.
Tenleigh with Dr. John B. Emans & Staff.

Share Your Halo Gravity — Traction Hospitalization Hacks With Us!




The Halo Gravity Traction Roller Coaster Ride:


Tenleigh, Tiffany, Bryce, and James. The Halo family at Boston Children's Hospital.
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: Peak/climax of the roller coaster ride.

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

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


Haylee's Halo Hospitalization Hacks
Tenleigh, Dad, MaMa, MiMi & PaPa Shrake before Surgery #25

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


Haylee’s Halo Hospitalization Hacks:



Donations to help the family with medical expenses can be made at http://www.gofundme.com/tenleighjoy


I am not an expert mom who has all the answers. I am the mom who cannot stop looking for them.


<strong><em><span style="text-decoration: underline;"><span class="has-inline-color has-black-color">Haylee Shrake</span></span></em></strong>
Haylee Shrake

The creator and blogger of Tenleigh’s Troops and a Nurse Technician since 2009. The previous place of employment was at HSHS St. John’s Children’s Hospital in Springfield, IL.

Overall, our platform is to bring awareness to spondylocostal dysostosis, klippel – feil syndrome, and thoracic insufficiency syndrome. Furthermore, Tenleigh’s Troops also promotes advocacy and support.

Contact
haylee.shrake@tenleighstroops.org
haylee.shrake26@gmail.com


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