When does “no” really mean “no”?

Other than the obvious circumstance, when does no mean no?  This is the question I’m pondering after a bewildering call with Drew’s ortho doctor in Nashville.   You may remember from May we visited Shriner’s hospital in St. Louis.  We spoke with a doctor who recommended a procedure that would gradually give his legs more extension while retaining the valuable rotation that Drew adaptively uses as hands.  And, it was decided due to Drew’s cardiology issues and insurance and Medicaid benefits, we agreed to perform the surgery at Vanderbilt.

After after nearly 2.5 months – yes, over TWO months – Nashville finally managed to collect all of the necessary medical records and notes from our Shriner’s visit for Nashville’s perusal.  An anxious two and a half months of waiting for some direction and resolution.  My phone rang, I recognized the 615 area code and was excited to hear what our next step was.  It was premature excitement.  The new consensus of both doctors is surgery is not an option.  My shoulders slump and my hope defeated.

I don’t know a lot about why yet, but soon will.  But mere minutes after speaking with them, I called a specialist in West Palm Beach, Florida who comes with high recommendations amongst many families with TAR.  So mid-November, our 2nd cross-country trip for Drew.

I mean, I’m not completely disappointed about having to go to a place whose name includes “Beach” so I’m not completely ungrateful.  But that’s not my point.  When should I accept that surgery may not be the appropriate action for Drew?  We’ve listened to the same song and dance since Drew has proven how adaptive, strong and independent he is and you know what they say: If it ain’t broke….you fill in the rest.

Consider this: many consumer products ads advertise with the familiar and over-used fact: 9 out of 10 [insert group] prefer XX product.  Who would you believe when choosing a consumer product such as toothpaste? Now, who would you believe when handing your heart and soul over to a doctor to slice open, drill, saw, and keep alive?  So, I beg of you: when does “no” really mean “no”?

I want to believe that this new doctor’s opinion will satisfy my hunt for the perfect solution for Drew, whether the answer is yes or no.  He has seen many patients with TAR and all of them recommend this doctor and has personally told me about the trials and tribulations they overcame before and after surgery.  Many of them have had issues as severe and even more severe than Drew’s.  This doctor has performed extremely complex and advanced procedures and is a leader in the orthopaedics community.

Considering that our previous interactions with doctors has been overflowing with concern over Drew’s functional use of his legs to compensate for his hands – and I can’t say enough that I understand, empathize and agree with this perception – then perhaps a doctor who sees TAR patients that I’m sure has developed the same adaptability as Drew has enough experience to consider all aspects of Drew’s needs and future.

So, that’s our plan.  Visit the doctor in West Palm Beach.  We’ll see what happens then.

In other news, Drew is suffering terribly in the ear department.  Though you’d never know it as he is as happy and active as ever.  He’s been unable to rid his ears of infection with the antibiotics that he’s been taken and has at least five infections since March so we are getting his tubes replaced and apparently there is some tissue that needs to be removed.  Here it is August and thought we’d be on the verge of leg surgery and now planning for only ear surgery!  Will keep you updated.


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