Around 1:30pm on day 3 of her recovery from tetralogy of fallot repair surgery, Maddie’s breathing and oxygen levels dropped to the point that the doctors had to intubate her again.  They had removed the breathing tube the day before and she was on just O2 via cannulas pumping into her nostrils.  During the intubation procedure, Maddie’s heart rate dropped precipitously.  The machines went off in a cacophony of alarms and our hearts sank.  The sinking feeling was exacerbated by the doctors calling for epinephrine, Callazo (the surgeon), and ECMO (which we didn’t understand but didn’t sound good).  The PICU doctors and nurses performed chest compressions while waiting for the surgery team.

We sat in the room to the side on the parent’s couch and watched helplessly while 15-20 doctors, surgeons, nurses, staffers, technicians, admins, and counselors worked feverishly to resuscitate our daughter.  Dr. Callazo, the surgeon, came in and immediately scrubbed and dressed for surgery while we were moved to an adjoining room due to sterile requirements.  Fearing she would get too upset, I asked Jen to move into the waiting room outside the PICU, but she refused, wanting to stay as close as physically possible to Maddie.

(For the following, we did not see any of this, but it was relayed to us either during the event or after the fact – some details are from reading her patient report – at the time we knew a fraction of this information).  The surgery team who performed the repair 3 days prior opened her chest cavity and the surgeon had to perform CPR manually to her heart, squeezing and pumping blood in the hopes of keeping her vital organs intact.  The plan was to quickly plug in the ECMO machine so that the blood could bypass her stopped heart.  After over an hour of chest compressions and manual CPR (with his fingers on her little heart), they were able to plug the ECMO machine into Maddie’s chest and she was getting a steady flow of oxygenated blood.  Surprisingly, the cardiologist came in and told us her intrinsic heart rate was back and the heart was pumping pretty strong.  They had her on the pacemaker as a precaution, set to kick in if she went above or below certain numbers.  Since the ECMO machine was doing most of the hard work, her heart was able to rest (akin to waving your arms in a swimming stroke while outside of the water, it helps strengthen the muscles with none of the resistance).

During this time, no less than 3 people had come and sat or stood with us as we waited for the results.  A crowd had formed outside and we noticed many people who weren’t even dressed in scrubs.  I realized much later that the people sitting next to us were grief counselors sent to us as part of the hospital’s standard procedure – such was the gravity of our situation.  The crowd was actually staff in the hospital, both on duty and off, who had come to provide whatever support they could.  Many ran full speed to fetch medicine, equipment, machines, water, or whatever was necessary.  The chatter from so many people was so loud that the attending doctor had to shush people repeatedly so the surgery team could hear each other.

Jen and I went downstairs after we knew she was going to be stable and tried to eat dinner in the cafeteria.  When we returned to the room, the staff had cleared out with only her nurses and the ECMO team left.  The doctors came and told us that they may have to transfer her to Children’s Hospital in DC due to a shortage of both specialized equipment and the staff to run them.  Maddie was actually on the backup ECMO machine and there were no more left at Inova in case they needed one.  At first we felt it was typical red tape/administrative run around, but soon learned that the cardiologist, resident, nurses, and PICU doctors had all fought to keep her in Fairfax and not subject her to a dangerous transfer.  However, Children’s had a Cardiac ICU specifically for children and had specialized equipment and more importantly, the staff to run them all.  The attending physician had started the transfer papers even before Maddie was on the ECMO machine, so sure was he that it was the best decision.

At around 7:45pm, we kissed Maddie goodnight and drove home through tear streaked eyes.

That night, we called many times to make sure she was still stable and found out that they would be doing the transfer around 11AM the following morning.