Perspective

The past week has been about finding perspective and allowing Cully time to heal.  We have now had a week to process Cully going on ECMO and learning more about his condition.

As you may remember prior to Cully’s surgery, he received a CT scan and echocardiogram revealing an additional anomaly with his pulmonary veins.  Prior to birth it was believed Cully had a classic HLHS defect, but the addition of the pulmonary vein anomaly has significantly altered Cully’s prognosis.  These two defects together produce a significant number of late term miscarriages as the body alters the normal course of blood flow.  In Cully’s the case the pulmonary issue was not that significant, however it greatly reduces the overall survival rate.  Coming to terms will this has been difficult for us, but we feel blessed that we have had this time with him and there is more to come, Cully has a lot of fight left.

Enough with the reality check.  While Cully has a long and tenuous road ahead of him, he has begun to make progress; however, slightly.  The majority of the excess fluid that built up in his body has come off over the week and he has been holding his own heart rate without the assistance of a pacemaker for about 48 hours. 

Yesterday, his care team decided that he has made enough progress that they would begin weaning the flow of the ECMO machine (lowering the speed at which the blood flows) and begin lowering his IV medications. In that past two days, they have pulled the flow 50 points, from 120 to 70, and reduced one of his blood pressure medications.  We are elated to report that Cully has tolerated this very well.  He has held his blood pressure and heart rate well within ranges and has continued to urinate!

This is a first step in the long road toward recovery, but is a step forward and for that we are extremely grateful.  He has been alert much of the day, interacting with his care team, as well as, mom and dad.  We moved a balloon into his line of sight to give him something other than 

Cully looking at a balloon while on ECMO.

Once again, we would like to thank you all for your thoughts and prayers, Cully and the whole family can feel the love of all of you.  We would also like to thank all of you for the offers of assistance, meals and most of all for being there when we need to talk or allowing us the space to process everything.