Waiting and remembering

We are anxiously awaiting the surgeon's office to call with Sarah's date of her next surgery in Boise as early as next week.  In all other circumstances, this *should*  be a relatively easy surgery to perform; however, Sarah is unique in her battles that chooses to fight.  With her recent admission and diagnosis of an axillary vein thrombosis from below her right axillary vein up to her clavicle, we are more hesitant of the ease of this procedure, a Port-A-Cath removal and an insertion of another.

The treatment of such a blood clot is typically low molecualr weight Heparin, Lovenox.  Unfortunately, Sarah has been on Lovenox for almost 6 years as well as aspirin because of her mechanical aortic valve and Factor V Leiden.  With these two medicines and a Lovenox dose that is completely therapeutic, we thought that we minimized the certainty of the creation of clots and certainly, one of this size and magnitude to her health.  Not true at all.

This isn't the first clot that Sarah's body has so defiantly created for her.  When she was a young infant, we went for a regularly scheduled cardiac ultrasound at her cardiologist's office.  The ECHO tech assured us that everything was great:  function, pressures, conduit flow, etcetera.  We saw the cardiologist soon after. He was to review the ECHO at a later time that day but was happy with the progress that Sarah was making in weight gain and heart sounds.  We were so happy when he gave us the permission to fly to Chicago for Thanksgiving..  Happy until we received his call later that afternoon.

Luke woke me up ( I worked the night before) and said that we had to take Sarah to the hospital immediately.  The ECHO earlier showed that there was a clot on one of the leaflets of her aortic valve. A large change from the promising ECHO of earlier. At first, I thought that he was joking with me but shortly understood that he wasn't and knew that this was very serious.

After days of Heparin therapy, twice daily cardiac cath lab fluoroscopy studies and daily ECHO, the weeks passed by for our Sarah.  Intravenous access was difficult at best for Sarah but critical for knowing her Heparin and Lovenox levels in her blood.  She was poked and prodded for hours when nurses and phlebotomists tried feverishly to obtain a blood sample from her. We spent that Thanksgiving and Christmas in the Pediatric Intensive Care Unit and on the hematology floor at Children's Hospital Central California.  Needless to say, it was an intense time for all but most importantly, our sweet, brave girl.

She was discharged with a diagnosis of Factor V Leiden, an immobile aortic valve leaflet to her heart and a Broviac placed under emergent circumstances.  If only we had known what was in store for us in a few short weeks time but then again, I don't think that anyone could ever be prepared.

So we now wait on the news of Sarah's 8th...maybe 10th surgery, I ask you to watch and listen to this  from pianist and congenital heart defect patient,  Paul Cardall.  His inspiration comes from those that are born and live with congenital heart disease (CHD).

Sarah in the PICU shortly after her diagnosis.