Thursday, December 22, 2016

Living With a Pinless Halo: The First Few Days

At the encouragement of my mom and after realizing there's like NOTHING on the internet about a pinless halo, I have decided to do a blog series about living with a pinless halo.  I'm hoping that sharing our experience might help out others who find themselves facing a pinless halo as well. 

Abby is in a pinless halo for at least 3 months while her body heals from a limited spinal fusion using Shilla rods.  The Shilla was placed previously in the Thoracic, but needed to be revised and extended up higher into the cervical spine to control her kyphosis.

We are currently day 3 into this 3 month+ journey.  She was casted for the halo a few days before the surgery, which was a two hour process that she handled remarkably well!  She got to pick from probably 20 different prints for her brace, which made her happy.  

The pinless halo cannot be removed by anyone but the brace creator (ours is NOPCO), and it is extremely tight against her body.  The brace itself is more or less a scoliosis brace with some sheepskin underneath for softness.  It also extends up the back of her neck and onto the back of her head.  She wears a brace shirt under it.  The pinless halo goes around her head and around her jaw.  Her neck is completely immobilized and she is unable to move her head in any direction.  She has managed to learn how to nod and shake her head using the slightest wiggle (it's not even a movement!)  

As far as pain (besides the surgical pain), most of what Abby complains about is that her jaw/teeth hurt.  The brace is very tight through there and pushes everything forward.  One resident described it as basically forcing TMJ.  Having had that in my life, I can say it's not pleasant!  Ice packs against her cheeks have helped a lot.  She sleeps with one across her face, believe it or not!

Since the halo cannot be removed, we are learning how to be creative with cleaning her.  She obviously can't shower or wash her hair, so I have been using the no-rinse shampoo from the hospital to wash her hair.  I haven't been impressed with that at all.  It's leaving her hair very clumpy and greasy.  I am going to try baby wash with a wet wash cloth tomorrow to see if that works better.  We have also found that two tongue depressors taped together with a baby wipe around them allow you to slide up under the brace shirt and at least somewhat wipe her chest and back.  The hospital has nice cleaning cloths, but they have to be specially ordered for us. 

Abby has a gtube, so a hole was cut out in the brace for us to be able to hook up her connector.  It's a little tight getting it connected, so we are leaving the connector attached as much as possible.  We have lots of button-down shirts for her to wear, but so far she doesn't want anything on over the brace!  It is also still a little tricky with the IV meds, pulse ox, and monitor cords coming out from every direction.  I'm hoping to start figuring out clothes soon, since it appears she won't be able to button over top of the bar.  We should at least be able to get it partially buttoned. 

Every day gets a little bit better!  It's only day 3 and I've already seen tremendous improvements regarding her tolerance and attitude toward the brace.

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