Preparing for an external fixator with our child.
Getting an external fixator is unlike any other surgery. Typically when you have surgery, you wake up with an incision and have little evidence of what happened. However, with an external fixator you wake up with metal rods protruding from your body and have the responsibility of caring for open pin sites while the bone heals. If possible, preparing for the surgery and recovery at home helps. It reduces stress and speeds recovery both emotionally and physically.
We always knew bone lengthening surgery was going to happen. However, we believed that we had a lot of wait time. The plan was to wait until my son was 7 so he could have an internal lengthening device instead of an external fixator. However, at a recent appointment, the surgeon told us it was time and we began preparing for the external fixator surgery. Here’s how it went:
We travel nearly 3 hours to our 5-year-old’s specialist. This is the 4th hospital we’ve been to and locating this surgeon was worth the time and energy we spent searching and meeting not so great doctors at not so great hospitals. While the conditions requiring an external fixator may be different for each person, our son has a bone tumor. This tumor has shortened and deformed his leg. We always knew that lengthening would happen. We just thought we had a lot of time before we would plan for surgery.
At our latest checkup with the specialist, the usual things happened. We got x-rays, the doctor examined them and came to examine our son with his assistant. When they were placing the lift blocks under his foot (he has a shoe lift) to level his pelvis…the doctor reached for an additional lift.
“His leg has gotten shorter, it’s time to do something.”
Things moved very quickly. Immediately, we started preparing for an external fixator. There is a lengthening device that is not external but at 5, my son’s leg bone is not big enough for it and the surgeon explained that external fixation, while difficult to experience, is the best way to go.
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Two fixator options
We were shown two fixator options. One, has several rings that go around the leg with pins sticking in from all different angles. We handled this, practiced twisting the pin adjustors and tried to imagine turning these several times a day for the next two months or so.
The second device has a metal bar that sits alongside the leg and has pins that go in from only one side. The surgeon was hoping to use this fixator but we wouldn’t know until the actual surgery.
Images below are from the respective companies, follow the links to read more:
Option 1. The modular rail system which was more desired because it gets in the way less but requires more initial surgery to correct the deformity.
Option 2. This is the more traditional system I’m familiar with that would have required less surgery up front but more complicated turning and trouble doing things like sitting on the toilet since this would be on his thigh. The lower photo is the Taylor Spatial Frame.
We physically held these devices in our hands and imagined turning them. In order to lengthen the bone, a wrench would be used several times a day to turn the fixator. This would increase the space between the bone that was created surgically and allow for new bone to fill in the open space.
Phone calls, phone calls, phone calls.
My best advice? Just tape the phone to your head. No, not really…it would get stuck! However, a handsfree Bluetooth is nice for the time that will be spent on the phone!
After seeing the fixators in-person my stress level shot up. As an Occupational Therapist, I’ve seen these devices on adult patients in a rehab setting, Where nurses are managing their care 24/7 along with inpatient therapy and an entire staff of people including therapists. My son would have this on at home, no inpatient setting and require care…along with his 3 brothers.
Getting this all set up is a balancing act and things like the calendar app on my phone and notepad have been essential.
I started making phone calls. The insurance company, outpatient rehab scheduling, pin care supplies, notifying our family doctor. Finding a therapist in our area who both treats pediatric patients and has experience with an external fixator was tough. I still wish we had rented an apartment by the hospital for a few months and had his care there.
Before the surgery, I tried to imagine how recovery would go. I knew that his bed would be key. After delivering 4 babies and spending some time myself on a hospital mattress, I couldn’t imagine a hosptial style bed making anything easier. I spent hours researching adjustable beds and am working with MyGreenMattress for the most comfortable mattress I have every lay on! Plus, they’re made in the USA and from stellar materials. Check out the mattress here.
We purchased a serta adjustable bed frame (the exact one is in the banner below) and it’s been amazing with the mattress combination. I have nothing but nice things to say about it! While everyone recommended a twin, we went with a queen for several reasons. Most importantly, I didn’t want my son to accidentally roll off of the bed and onto the floor. I pictured us driving down to the hospital at light speed. Second, he would never be alone in the bed. His brothers, me, Grandma…visitors…would be spending time with him while he lays down and heals.
Other really important supplies
With an external fixator, we were told that it could not be put in water. My bubble bath loving child would have to switch to showers. We installed a shower bar, tub bench and sanitized his bath towels.
After bathing, he needs to lay in bed for “pin care,” which is a whole other blog post…I’ll get it all typed up soon! Reusable mattress pads and a zippered waterproof cover for the mattress are very important as well as his wheelchair and rolling walker.
As soon as I saw the external fixator I knew I needed to find clothes. The device sticks out so far that none of my son’s current pants or shorts would fit over it. In addition, underwear would be a challenge. I spent hours shopping online and finally found some side snapping pants. They have been amazing to say the least and worth every penny!
Side-snap underwear were custom made for him by Purple Unicorn shop. She turned superhero underwear into side-snapping briefs so he can put them on and off without dragging them over the fixator and his open areas. She is a small home shop and she handmakes clothing and custom items including cloth diapers.
The car seat will just not work
All of my boys have the same convertible car seat. It goes up to 110 lbs and even has cup holder. However…I knew right away that the external fixator would hit the sides and be really painful. It probably wouldn’t even fit at all! Luckily, the hospital had a loaner car seat for us because we couldn’t find one anywhere shopping.
Luckily, the hospital had a Britax Hippo special needs seat we could borrow. Unfortunately…the seat is no longer made and completely out of production. I spoke to both the Britax company and the R82 and they are completely sold out.
However, the Britax rep did say that they are designing a new special needs car seat that it just not out of production yet…stay tuned because I plan on tracking it down when it releases! I did speak to a car seat expert they referred me to who said that he believes this new seat will only be suitable for infants and toddlers and that their go-to seat to replace the Hippo is the Diono Radian RXT in the banner below.
(Hippo no longer available below)
(Pinterest image below)