Rachel asked me (her dad) to write for her blog today, perhaps to attempt to provide some insight into Audrey’s status. I promise, the beautiful literary masterpiece writer will write again soon.
Audrey is 24 hours post-op. Her cardiologist had indicated she had what is called Cor Triatriatum but in my dialogue with the pediatric cardiovascular surgeon this morning, that is not the case. The previously unknown condition that lead to her rapid decline yesterday is a problem with the anatomy of the veins that carry freshly oxygenated blood back to the heart (left atrium) from the lungs where it is then sent through the large chamber (left ventricle) and pumped to the whole body. Those veins, especially those exiting the right lung, have an abnormally small diameter that have wreaked havoc on her little lungs. That starting Sunday. Back pressure then developed that caused a fluid problem in her lungs called pulmonary edema. They became unable to adequately transfer oxygen to the bloodstream causing a rapid decline in her oxygen saturations. Conservative measures were unsuccessful and a repair via open heart surgery was required to rescue her from this rapid downward spiral. That was a very frightening chain of events. The prayer chain shifted into turbo mode.
The surgery has been successful thus far. Today (Wednesday), she has been fairly stable. She has NOT required the use of ECMO (extra corporal membrane oxygenation) which might have been needed to bypass her lungs if they did not recover quickly enough. The sternum was left open and separated a few centimeters by a sterile rod to allow rapid access into the chest cavity if needed to stop bleeding, start ECMO, and to prevent cardiac tamponade; a condition in which blood and fluid fills the space around the heart in a normally closed space, constricting the heart and rendering it incapable of pumping effectively. The opening is covered with a clear sterile membrane (the Saran Wrap Rachel described) that is really hard to imagine. Who can imagine directly seeing your child’s heart beating through such a window!! It overwhelmed Rachel as she witnessed this for the first time last night.
This window to her little baby bunny sized heart will be closed in a few days if all goes as hoped. That will happen in her room. They will clean out the space around the heart and wire her sternum closed then close the skin.
She has tubes in both chest cavities, her windpipe, her abdomen, and her little bladder. She has lines in an artery to directly measure blood pressure, one in a “large” vein to monitor the total fluid volume in her vascular system, another in a vein to administer meds. She has wire pacemaker leads on her heart if her rhythm falters. She has oxygen saturation monitors in place, temperature monitors, tissue perfusion monitors and I’m guessing monitors that monitor the monitors!
It will take a long time for her to shed all of those tubes lines and monitors. Probably many weeks.
We continue to remain hopeful that this will happen, that she will continue to defy the odds and pull through this and go home with her mommy and daddy and big brother. We had hoped that was coming sooner. The homecoming will be that much sweeter.
She has a lot of stuff going on….
The complexity of the delicate balance of the management of her body systems is an amazing thing to witness. We hope none of you has to experience this first hand. Some of you already have. The musicians of this orchestra are playing a beautiful symphony, truly a masterpiece we believe being conducted by God of the universe and the Creator of little Audrey Claire Leslie. We believe He has many more symphonies to come through her, we would prefer they sound a bit more soothing and relaxing.
He is speaking to all of us without words through this precious tiny little girl. She is touching us deeply. She has captured our hearts as you might imagine. We as family have witnessed a remarkable example of the power of the love of a father and a mother for a child faced with tremendous challenges. Frazzled, exhausted, frightened, puzzled, angry, sad, grateful, thankful, joyful describe just a few of the phases of emotions over these past months. They have been tested beyond comprehension. They are fighting a hard fight for their little Audrey bunny. They deserve all that we do to come along side them in this “hour” of need.
Our thanks to all who are praying and pulling for team Audrey. She seems to have an amazing strength to have made it this far. Your prayers are apples of gold.
Keep fighting little princess.
You are dearly loved