When the benefits cannot be guaranteed and the risks are too great …being the bad guy is the last thing you worry about

By now I expected Chelsea to be about 4 weeks into her recovery from the surgery that would ensure that her high school experience would start with her in the best possible position. Sitting upright in her chair and relatively pain-free. Best butt forward so to speak… instead she has been horribly depressed and is 4 weeks into blaming me for the surgery not happening and still slumping from  60° scoliosis whenever she gets in her chair.

I had to make the very difficult decision in June to postpone Chelsea’s spinal fusion surgery.   The surgery that had been the focus of the Paintability exhibition fundraising activity. The surgery that I had spent about two years preparing myself to say yes to. Two years of research and discussions, endless trolling of medical sites and chat boards convincing myself not to be negative as the common risk factors of quadriplegia wouldn’t apply as she already has that.  Most importantly this was to be the surgery that Chelsea believed would make her sit more comfortably and more upright in her wheelchair and would generally make her feel better about herself

So why did I agree to postpone the surgery? Because the key medical team that have looked after her for the last 5 years were brave (with my juggernaut personality and conviction that it was the right decision  you will know they were brave)  and kind enough to tell me that they were not convinced that the potential benefits outweighed the significant risk factors. In effect they asked me to reconsider.  So I did.

When you have a child with a chronic condition you get used to signing and agreeing to treatment plans and procedures, even surgeries. Most of them come with a discussion of risk factors. Everything has risk factors but the benefits are usually so overwhelming and clear that any perceived or actual risks are always worth taking.  In these situations for me doing something is balanced by the agonizing fear of making the wrong decision and by concerns that by doing nothing I could cause her even more harm. So I always educate myself as much as I can, I ask questions and do endless research but then finally I have to make decisions and pray it’s the right one.

When Chelsea had to have a tracheostomy in 2007  the doctors told me there was a significant chance she would not be able to speak after the surgery.  Having only just come to terms with her being a quadriplegic,  the idea of her losing the ability to  speak of becoming locked in had to be weighed against her continuing to struggle to breathe. Easy choice but it still took two weeks for me to come to it.

For the Spinal Fusion Surgery the  conventional orthopedic dept risk issues were acceptable which is how everything progressed so far and the surgery was scheduled but for the rest of the team that look after her  the risks were assessed and deemed to be just too great at this stage. Infections and lung function and recovery issues were all considered to be higher than normal risk factors for Chelsea.

But the real concern was the risk of Chelsea suffering a fresh bleed to the heamangiomas in her brain stem

If Chelsea were to have a fresh bleed there are all sorts of things that could happen  including  it being the fatal bleed or of it causing cognitive impairment or resulting in her potentially becoming locked in. (locked in syndrome).

So that’s death or a living death with her locked in and unable to communicate with the world  vs the chance that the surgery could go well and she would be able to sit more comfortably.

I am just not willing to risk losing her or losing what she is – which is, in her own words, awesome. We went to a meeting with a client this week to discuss a board room painting project and on the way back  she got to ride on a train for the first time in 5 years.  Her sheer joy and excitement was a thrill to behold. She is both wonderfully alive and  amazingly  talented.

So I postponed the surgery and hope that everyone, especially all of you who were kind enough to support her, will understand.  The team are doing more research to understand and manage the risks of the surgery for her and when they are more confident of the outcomes we will be ready. But for now we have to wait.

And  hope that Chelsea will accept why I would rather be the bad guy than take a risk.


About Sandra F

Juggling work, family and personal life without much success...
This entry was posted in Children, Disability, Parents and tagged , , , , , , , , . Bookmark the permalink.

One Response to When the benefits cannot be guaranteed and the risks are too great …being the bad guy is the last thing you worry about

  1. Pingback: The pain only makes me stronger | blogs.ruthmini.com

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