Thursday, February 13, 2014

Happy "New" Heart Day Brinkley!

If you follow me on Facebook or Instagram you may have noticed that this week is Congenital Heart Defect Awareness week.  I have been posting facts about CHD's each day for the last two weeks.  CHD is something that affects our family very closely.  As a matter of fact this week happens to be the anniversary of Brinkley's second open heart surgery.  

Last year at almost this exact time, this is where I found myself and my 5 month old son.  At 1:15 on 2/13/13 we had an appointment with pulmonology for Brinkley to receive his RSV vaccine.  The days leading up to this appointment his 02 sats had been fluctuating greatly.  The same happened in the pulmonology office as well as a heart rate in the 40's.  We were scheduled to leave pulmonology and go downstairs for a routine echo in our cardiology office.  It became quite clear that the Pulmonologist was very concerned with Brinkley's vitals and he called the cardiology office and insisted that we needed to be seen by the doctor rather than just the tech doing the echo.  Our doctor was not in the office and the only one on hand had never dealt with us before.  

We proceeded downstairs to be quickly met by Dr Lucas and even more quickly swept away to the echo room.  This echo was quite short and was followed by a conversation with the doctor that we would be heading straight to the PICU and should expect to be flown to MUSC before the end of the day.  Brinkley had gone into complete heart block and needed immediate surgery.  I'm not sure that I realized how serious the situation was at the time.  Complete heart block means that the top and bottom chambers of the heart are not working together and it is not uncommon for this to be fatal.  

We spent about 12 hours in the PICU at GHS while waiting for a flight to MUSC.  About 4am we were airlifted to MUSC and within a few hours Brinkley was taken back for his second OHS.  This time his initial TOF repair was revised and a pacemaker was placed.  If you are thinking about the dates, Brinkley's "new" heart was placed on Valentine's Day.

Let me just say what a difference a year makes!  Today Brinkley is missing therapy due to a snowstorm, but he would normally be amazing us all on Thursday morning with his attempts to walk and crawl and his awesome progress in OT.  Right now he is crawling around the playroom eating every toy he can get his hands on.  It's hard to believe that the fragile little guy in the picture above is the feisty, wild man that we live with today.  He is so full of life and we have an amazing team of doctors and therapists to thank for helping us get to this point.  

I know at least three other local moms that have had to leave their babies in the hands of the MUSC team over the last couple of weeks.  I write this to hopefully encourage you and to let you know that I've been there too.  Those moments and days can be so overwhelming and down right terrifying.  We prayed (and continue to) that God would give us just the right team to help Brinkley and He was faithful.  It has not been an easy road and there have been many set backs, but God is good and we see His hand in Brinkley's life everyday.  

Many people ask about Brinkley's scars and I wondered about scars as well when we started this journey.  I just noticed last night how well he has healed and I wanted to share it as encouragement as well.  

This is the scar following the second surgery.
Scar as of 2/13/14

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