Impossible Decisions

Impossible decisions. Parents of a special needs child are faced with more than their fair share of them.

Medications with horrible side effects that may not work, risky surgeries with uncertain outcomes, expensive alternative therapies on the quest to find answers for their child – these are just a few examples.

We’re facing an impossible decision right now. It’s not something I talk about much because over the years I’ve learned that the only way I can control how much energy these kinds of challenges suck from our life is by giving them as little oxygen as possible. We do what we need to do, talk to who we need to talk to and keep moving forward. A recent conversation with a mom facing her impossible decision changed my perspective a little. Maybe if I share our current impossible decision, someone else might feel stronger in theirs.

Among many challenges, my daughter was born with a hip socket that’s not quite as deep as it should be. Over the years the combination of this and her vacillating tone have caused severe scoliosis and a sublexed hip, a hip that’s partly out of the socket.   Her tone is hard to describe, but essentially her body become very stiff when she hurts, it’s like her entire body is doing isometrics, but not symmetrically. The muscles on one side push in one way and on the other side another way, putting a lot of pressure on her bones. She has biceps like Popeye, abs of steel, and bones that are changing as they bear the brunt of this condition. Dealing with that tone has it’s own set of impossible decisions; it doesn’t respond to medications or therapies in a consistent way, and then if she’s sick or has pain anywhere, it shifts to high gear and you can almost feel the damage being done as you hold her.  It’s heart breaking.

After an episode of extreme pain from an injury, Veronica’s sublexed hip was pushed out of the socket by high tone that initially couldn’t even be managed by hospitalization. She was so fragile that surgical intervention was impossible. Eventually we were able to develop a plan that allowed her to be home, but she required 24/7 hands on care, steroid shots, pain medications and therapies. Her hip was so bad she couldn’t sit, which included her wheelchair and car seat so she couldn’t leave the house. Amazing therapists agreed to home visits. It took 5 months for her to recover, but her hip did find a happy place. Then I was able to start my own recovery. This stuff takes a lot out of a mom – and family!

I think Veronica is always in some degree of pain, but that girl is so tough! Her hip had been in a generally happy place for a couple of years, until a few months ago when it started causing her pain again. We went into our pain management and therapy mode, but the pain was progressing. The ball of her hip had repositioned.

A visit with her orthopedist and rehab doctors revealed very few options:

• Hip replacement was not an option because of her muscle condition (I’m not done with that conversation – I’ve got more research to do!)
• The surgeon could “lop off” the ball of her femur and create support for her hip with her muscles (um, what?!?! No thank you!)
• We could keep just giving her meds for the pain, which have been ineffective thus far.

Great options, right? None of these is a certain path to improve my daughter’s quality of life long term. I want to see my girl happy again. I want her to get out and live life, not just be stuck in an endless cycle of managing pain. I long to move outside of these walls that hold my sweet girl back. I would do anything.

I asked about treatments I’d read about, but they weren’t treatments the ortho had done before. So I added option 4 and requested a cortisone injection in her hip, the ortho pessimistically agreed.

Veronica had the procedure two days ago and handled it like a pro. She’s been through these things many times before and is kind of fearless, enjoying Katie Perry’s “Roar” while waiting in pre-op, charming the nurses as they wheel her in. Today her body is relaxed and I’m seeing more smiles than I’ve seen in weeks. She’s back to her giggly, adventurous self, and I’m back to planning fun outings with a happy heart. The cortisone may not be a long-term answer to this impossible decision, but it’s one I’m happy to live with for now.