A Grateful Heart
March 5, 2014
Dear Family, Friends and Colleagues,
We are now just beginning to exhale from the crisis our family experienced over the last few months when our middle child, Justin, was admitted to the ICU cardiac care on December 30, 2013. Justin was suffering from an illness called infective endocarditis, which occurs when bacteria enters the bloodstream causing an infection in the heart.
Justin had his first open heart surgery as a newborn at Children’s Medical Center in Philadelphia in July 1996 to correct a very rare birth defect known as Taussig Bing Syndrome. The defect is characterized by the aortic and the pulmonary arteries both exiting from the right ventricle impeding the pumping of blood to the lungs. The surgery was successful.
In June 2013, he underwent a pulmonary valve replacement surgery when his cardiologist noticed the valve was leaking causing enlargement of the right side of his heart. The surgeon replaced the defective valve with a pig valve. Although this was a very complex surgery, due to the prior reconfiguration of the heart, it was successful and he recovered beautifully with no complications.
Justin became ill on Christmas Day 2013 exhibiting flu like symptoms. He had vomiting, fever, joint pain, loss of appetite and extreme lethargy. Upon admittance to the hospital, the doctors noted a bacterial infection had attacked the newly replaced valve. Attempts to treat it with IV antibiotics over several weeks were unsuccessful as the infection was deeply embedded in massive vegetation within the valve. The vegetation was harboring the infection allowing it to reproduce and eat away at the heart valve causing a multitude of other complications. An abscess had also formed on top of the valve further defeating the treatment plan.
The damage to the valve resulted in the leakage of blood and rendered the valve incapable of distributing blood to the other organs. The bacteria also showered his body resulting in dangerously high fevers, erratic blood pressure, extreme pain, shortness of breath, extreme weight loss and disorientation. He was in critical condition and required another open-heart surgery to remove the damaged tissue and replace the valve, but his body was also septic making surgery very high risk. Additionally, he was only 7 months post-op from the previous surgery and there was great concern about operating on a weak body and a sick heart. The doctors were weighing the risks of waiting to see if the infection would subside long enough for them to operate while acknowledging the damaged valve was life threatening.
On January 9, 2014 while he slept, Justin’s EKG showed a heart blockage for a period of 5 seconds. The valve had deteriorated to the point of complete malfunction , they rushed him to surgery. The conditions were far from ideal, but the risk of waiting was no longer a viable option. Justin underwent a 9 hour surgery where they removed the infected valve, the abscess and the surrounding tissue. They successfully implanted a homograph (human pulmonary valve) and rinsed the chest cavity with antibacterial wash to clean the remaining tissue. The surgeon left his chest cavity open for a day post-op to give the heart room to swell and to insure the bleeding was under control before closing his chest. He was kept is a paralyzed state for a day to insure immobility.
Justin woke up on January 10, 2014 and began the long road to recovery with multiple chest tubes, breathing aids, 30 sutures and IV lines to continue to administer antibiotics to his blood stream. They continued to culture his blood to insure the infection was gone and work to stabilize his blood pressure, blood gases and renal functions. As his bleeding subsided, they gradually removed his chest tubes allowing mobility and the beginning of physical therapy. He also started to eat normally after a weight loss of 25 lbs.
Justin was released from the hospital on January 24, 2014. He had an in home care nurse who visited on a weekly basis to check on him and change his bandage dressings. He also had a PICC line inserted in his right arm that allowed the administration of antibiotics directly to his heart as well as a host of other oral medications. He was required to attend weekly cardiologist visits during his course of treatment to insure no return of infection and return of blood levels to normal.
He started back to school on a part-time basis the first part of February and has now returned to school on a full time basis. He is off all medications and his PICC line was removed on February 25th. The last test results (as of February 28th) showed all negative bacterial cultures and all normal renal function. He weighed in at 133 lbs!
The doctors have called his successful surgery and recovery “miraculous”. There was no noted ancillary damage to the heart and the new value is working at 100% efficiency. The doctors are 99.99% sure this infection will not return. We could not have asked for a better outcome.
Our family has been deeply touched by all of the love and support by our families by Pebblecreek Montessori, Cozen O’Connor, Jesuit, Prince of Peace, St. Edward’s, neighbors , friends and friends of friends shown us over the last few month. Words cannot adequately express our gratitude for the continuous chain of prayers, well wishes, kind gestures and delicious meals. It is very comforting to know others care so much during a period of desperation and what seemed hopeless at times.
We have resumed our roles in the world. Normal is a very good and comfortable feeling. This experience has been life changing for me and the way I view the preciousness of life. Every day truly is a gift.
With a very grateful heart,