Monday, August 11, 2014

A Change of Plans

In late June, Hannah was seen for the second time at Shriners to evaluate her feet and develop a treatment plan.  From our first visit to the second visit, the doctor's approach to treating her feet changed significantly.  We went from planning to do weeks of serial casting with a heel cord release (a minor surgery) to doing a short period of casting followed by a 'full release' to cut tendons and muscle and place external pins on both feet.  We went along with this plan, scheduled all the surgeries and appointments and began to pump ourselves up for the challenges ahead.

About 3 weeks ago I started to feel unsettled about her treatment plan.  Nothing specific happened to make me question it- I just began to feel like maybe it wasn't the right approach.  Looking back now, I truly believe it was the Lord prompting me to research and ask questions so we could protect our daughter and make the best decisions for her.  I voiced my concerns to Bryan and he encouraged me to contact other physicians for second opinions.

I contacted a physician in Philadelphia who is considered the nation's specialist in AMC.  I have emailed him twice and heard back the first time in 16 hours and the second time in 1.5 hours.  He shared his philosophy on treating children with feet like Hannah's and gave some clear direction on what we should and should not do for her.  He also believes, based on pictures I sent, that Hannah's feet are mild and straightforward to correct.

I also asked for experiences and opinions from other AMC families.  Across the board, everyone encouraged us to get a second opinion and not settle for going straight to the OR to fix Hannah's feet. I am so thankful that the Lord prompted me to start asking questions.

When we shared our concerns with the doctor in Houston, he was obviously less than thrilled that we didn't agree with him on what was best for our daughter.  I am thankful for my articulate, intelligent and calm husband who did most of the talking.  Bryan thought it would be best for him to talk more and told me so before the appointment since I was a little too "passionate" about the subject :)  The doctor in Houston agreed to try serial casting on Hannah but not until mid September.  He seems confident that it will not work although family after family tells me that the physician in Philadelphia corrects their child's feet with casting only and no major surgery other than the minor heel cord release.

In the meantime, we have an appointment with an orthopedic surgeon at Texas Children's on Thursday.  We will see if that physician shares our desire to take a conservative, gentle approach over surgery as a first attempt.  He was recommended by another AMC family so we are anxious to hear what he thinks about our daughter's sweet feet.

We also have an appointment in Philadelphia with the top notch doctor! Unfortunately he has a loooong wait for new patient appointments so we will see him on June 29.... of 2015!  We will continue to seek out opinions here, and potentially do a series of casts with Shriners or Texas Children's, until we can be seen in Philadelphia.

I had spent a lot of time preparing myself emotionally for casting- thinking about what it will be like for us and for Hannah, how I would bathe her, will she fit in the shopping cart, what clothes will she be able to wear, and on and on.  While the change of plans today is the best decision for Hannah, it feels a little like an emotional roller coaster for all of us.

We want the very best for Hannah and don't want to put her through unnecessary surgeries that could cause lifelong pain from resulting scar tissue and stiffness.  I'm thankful that while we of course need to address her condition - we are not in a life or death situation here.  Most of all I'm thankful that we have the ability to seek out the best medical care for her and make decisions for her well-being, all while trusting that God is sovereign over all of it!

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