Misadventure

It's kind of hard to know where to begin, so we'll just start here...

A couple of months ago, Otis began to quickly outgrow his AFOs, or Ankle Foot Orthotics--they're the braces he wears to help keep his feet in alignment when he does any weight-bearing exercise. When we got his new ones in about a month ago, he began not wanting to bear weight on his left leg. Otis typically really loves doing walking and standing exercises, so this was new. The new AFOs were actually not the style we had been expecting--there had been some sort of mistake--so we worked with his orthotist to order some new ones. While we were waiting for the new-new AFOs to come in, we continued to blame his not wanting to stand on the faulty AFOs. They weren't broken or misshapen or anything like that--they were just not what Otis was used to wearing on his feet.

However, because Otis also has bilateral hip dysplasia (due to being unable to weight bear on his own and run around like other kids his age, the ball each of Otis's femurs do not fit into their sockets all the way) and we began to wonder if the dysplasia was maybe worsening and causing him discomfort.

It was out of this concern that, last Wednesday, we took Otis in to see his orthopedic doc for a consult and some x-rays. The x-rays revealed that his hips had NOT worsened (the good news), but that he had a slight fracture in the middle of his left femur (the bad news). Over the course of Otis's life, he has been on 15 different antiepileptic drugs which, over time, leach minerals from the bones. This, in combination with not being able to walk or get the daily weight bearing that typically developing kiddos his age do, as well as the 2.5 years spent on on the nutritionally incomplete Ketogenic Diet, has given him osteopenia, the precursor to osteoporosis. (Some of you may recall Otis's first femur fracture back in February of 2014--just 3 months before we moved to Colorado in pursuit of medical cannabis to treat his seizures.)

The ortho doc said that the break appeared to be about 2-4 weeks old and was, fortunately, healing very nicely on its own. Despite this, he decided to put Otis in a temporary brace to keep his legs in place until it healed. He worried that "should he have another seizure" before the fracture was completely healed, the fracture would become worse. He unfortunately failed to seriously consider that Otis has convulsive seizures on a daily basis--and had been doing so for the past 2-4 weeks, or as long as the fracture had been there.

Not long after we got home from that visit, Otis had a convulsive (tonic-clonic) seizure while wearing the brace. Because the brace restricted his legs from being able to move the way they needed to, it caused his left femur to break further, making a haunting sound and sending us straight to a local ER via ambulance.

Teachable moment: Seriously…DO NOT try to restrain someone who is having a seizure.

The first responders arrived within minutes, followed very shortly by the Manitou and Colorado Springs EMTs. There were a total of 9 emergency people in our living room taking care of Otis. One of the EMTs from the Manitou Volunteer Fire Department had actually met Otis before and was already familiar with him and his history of seizures. (When we first moved here, we were invited to speak at the Manitou Springs Volunteer Fire Department to introduce everyone there to Otis and help everyone there to become familiar with him.) Everyone was amazing.

We spent some time in the ER before Otis was admitted to the pediatric unit. Ryan stayed that first night with him while Kathy went home to get some sleep. On Thursday evening, Otis underwent a surgical procedure to have a stainless steel rod placed in his femur (a procedure called "elastic nailing"), and received a spica cast which he will wear for the next 6-8 weeks. 

We were able to bring Otis home from the hospital late Friday afternoon. He had a rough first night and day at home--lots of big seizures, discomfort, and just plain not feeling good. We’re hoping his recent increase in seizure activity subsides soon and that it is only temporary, as he continues to withdraw from from anesthesia and other meds he was given in the hospital. He needs to be repositioned about every 2 hours. Because he is nonverbal we’re not sure, but he doesn't seem to be in much pain at this point. Motrin and Tylenol seem to be keeping it at bay. He does, however, seem exhausted and slightly bummed…as are Kathy and I.

While we always wish life could be easier for Otis, he continues to be the sweetest person we have ever known, and inspires us daily with his spark and his resilience. He reminds us constantly what really matters in life.

Just minutes before the seizure and fracture, wearing that stupid makeshift brace. 
[Insert curse words here. All of them.]

  

Splinted, in the E.R. late Wednesday night

Getting ready to go into the O.R. late Thursday afternoon

Room with a view

Friday

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