Monday, April 7, 2014

Rewind~what happened in January

As we prepare for Cecilia's 3rd open heart surgery, I realized I have not been blogging.  I apologize to my friends and family who use this as their main resource to stay in the loop.  I forget that not everyone I love is on Facebook. 
Cecilia went a whole year without an overnight hospital stay.  Even including the 3 days of research we did in Minnesota--that was entirely outpatient.   I had publicly bragged about making it a year.  Then BAM, karma got me I guess.  I guess I needed a reminder, or something.  
As we began the new year of 2014, we were moving.  Karl had the truck.  Everything was boxed and packed.  On this same day, Cecilia had a golf ball size of puss in the center of her chest.  I took her to Children's immediately after rushing her to the Pediatrician first.  Karl was stuck handling this move without me while Cecilia and I were in the hospital.  It felt like the Universe said "oh lets just throw this their way and see how they handle it".  How can this really happen, right now?  As if we haven't already learned all to well the ache of separation. 
Cecilia's had a reoccurring infection in her sternum that began during the Interstage (after her first open heart).  She has sutures that were supposed to dissolve but instead they haven't.   Her body basically rejects them and these sutures are protruding out of her scar for as long as I can remember.   When these drain puss, Cecilia has been given oral antibiotics,  but most commonly an antibiotic ointment.   She never had a fever and it was all more cosmetically disappointing.  Her scar was not very beautiful with these sutures poking out.  As Cecilia has gotten bigger and discovered them, she was constantly itching, picking, scratching and pulling at them.  They definitely bothered her.  We think her touching them all the time is how this infection occurred.   She had a fever and she was in pain.  It makes me so sad that this happened to her.
Her team in DC took great care of her.  They started her on IV antibiotics immediately.   A Surgeon had to take Cecilia to the  OR to drain puss and remove all of the type of sutures that Cecilia was rejecting.  The next day they placed a Wound Vac, "the littlest wound vac ever", to ensure elimination of the puss and to enhance the healing process.   She had that on for only a week,   but we stayed a few more days on IV antibiotics.   When Cecilia came home (January 15) she remained on antibiotics for another week.   While inpatient, Cecilia's team and I discussed that she needs a Catheterization and there would likely be intervention.  I will prepare a "Rewind- Boston" post to go over Cecilia's cath. 
In January, I wrote, "Ive overthought, analyzed, cried, prayed and thought some more on what to do for Cecilias future interventions on her heart since she was diagnosed inutero, and there has never really been peace on our decisions. The anxiety and fear recycles after every complication and everytime Im required to sign a consent and trust my daughters life in the hands of a stranger. Our second inpatient experience @ CNMC (dc) has been wonderful again. So much so that I have been having difficulty justifying it in my mind why I would need to travel out of state for surgery when we have a great hospital in DC. The horrible experiences we watched our cecilia go through with University of MD has scarred us for life. So with that said we still going to Boston most likely just because they have the most experience and are the leading Innovators of the world. What happens next is we travel to Boston for a cath because all places atleast agree it is overdue for a Cecilia tune-up..." .  The potential loss of communication between centers is the biggest concern I have. 
Here are some pics.  Her scar is beautiful now and she never picks at anymore. The pic in the bath is recent, but everything else is from DC.  

Afterwards (home)...
no filter:

 Cecilia's scar now:
looking good ♥