Boston Strong.

Dolly’s medical conference took place yesterday.  It lasted over 90 minutes and was very helpful for FPD and I when it comes to understanding all Dolly’s options.  

The hard part about treating a Congenital Heart Defect (and I say treating, because sadly, there is not now, as medicine stands, a way to “fix” Dolly’s heart.  We had hoped there might be, but there isn’t), is that the ultimate decision about which way to ‘go’ surgically falls on the parents.  

There is no “roadmap for care” the way there is if a child develops Leukemia.  There are only options to research, pros and cons to weigh and discussions to be had with many, many, many medical professionals.  Sometimes, no one agrees on what the best answer is.  

Time was, and is, on our side though.  We’ve managed to stave off any major decline in heart function and actually heal Dolly’s lungs over the last twelve months.  She has had time to grow, develop and catch up with her peers.  We have had time to research.  

Last spring, I posted this post regarding Boston Children’s Hospital and the involvement they would have in Dolly’s care.  After reviewing, discussing, catheterizing, reviewing and then discussing again, they’ve decided that this spring will mean it is time for us to fly.  We will meet with one of the top pediatric heart surgeons in the country and we will decide when Dolly will undergo her next open heart surgery.  

Yesterday, it was decided this won’t just be a consult.  When it’s time, she will undergo this surgery in Boston.  This is 1100 miles from where we live.  We have no idea how long the recovery will be for Dolly’s surgery.  It will undoubtedly take a couple of weeks, at the very best.  For those weeks, she and I will reside in Boston.  We are exploring all options for how best to support our other children as this all happens.  She rocked the Cardiac Intensive Care Unit (CICU) with her first surgery which was done locally.  We are praying she will be the same kind of strong when we hit Boston later this year.  

Thank you to everyone who messaged, texted and emailed me words of encouragement.  You have no idea what a lift this brings my own heart.  We’re sad that Dolly has to live through this, but we are also equally as thankful that she is living at all.  As always, our prayers are with the babies around the globe who don’t have access to the kind of medical care that she does.  

who is at peace with the plan and is ready to be Boston Strong too.

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