2009:
March 8 at 6:46 a.m. – Ethan is born! – 6 pounds, 5 ounces and 19.5 inches long – Doctors discovered that something was wrong with his heart around 8 hours after his birth.
March 9 – Underwent 1st cardiac catheterization to “map out” his heart. Official diagnosis: Pulmonary Atresia with VSD
March 11 – Had his 1st open heart surgery to close the VSD and place a right ventricle-to-pulmonary artery conduit (surgery #1)
March 19 – Back to the OR to have a permanent pacemaker implanted (surgery #2)
March 30 – Moved out of the PCICU!
April 3 – Placed on NEC watch due to abnormal x-ray reading
April 13 – Broviac line placed (surgery #3)
April 22 – Ethan coded and it took 11 minutes of CPR to bring him back to us. Most likely cause: micro-aspirations. Back to the PCICU.
May 7 – Had a G-tube placed, along with the Nissen procedure (surgery #4)
May 11 – Moved back out of the PCICU
May 14 – DISCHARGED! Ethan came home for the first time after spending 9.5 weeks in the hospital!
August 31 – Back to the cath lab for diagnostic information and possible intervention (cardiac catheterization #2 – not successful)
September 14 – 2nd open heart surgery – conduit and pacemaker were replaced (surgery #5) - Ethan came home 6 days later!
2010:
January 4 – Corrective surgery on Ethan’s left arm (surgery #6)
March 8 – Ethan’s 1st birthday!!
March 16 – Four-part surgery: urology repair (surgery #7), adenoids removed (surgery #8), PE (ear) tubes placed (surgery #9), tear duct dilation (surgery #10)
April 21 – Developed a fast-moving bone infection in his left index finger (osteomyelitis)
April 22 – Emergency surgery required to stop the infection (partial finger amputation) and repair the left median nerve (surgery #11)
November 2 – 2nd stage (final) urology repair (surgery #12)
December 20 – Ethan pulled out his G-tube during nap-time; his medical team decided to leave it out!
2011:
March 8 – Ethan’s 2nd birthday!!
May 5 – Catheterization #3 – success! – Dr. R. placed a stent in Ethan’s current conduit and brought his gradient pressures down by half!
July 19 - Cardio check-up, post-cath. Dr. I. moved Ethan to 6-month cardiology visits.
August 15 - Genetics follow-up - moved to yearly visits. All genetic testing has come back negative!
October 25 - Orthopedics follow-up - moved to yearly visits. X-ray showed no change in Ethan's left arm. Maximum and ideal correction has been obtained at this point!
November 21 - Urology follow-up - renal ultrasound showed NORMAL kidneys and Ethan shouldn't need any further surgeries. Next visit - 2 years!
2012:
January 17 - Cardio check-up. Pressure gradient was up somewhat from July, but still very stable. Next visit - 6 months!
February 12 - ER visit for high fever (104-105) and high heart rate (170-180). Diagnosis = virus.
February 29 - Three years of feeding and speech therapy came to a close - Ethan's last speech therapy visit.
March 7 - Ethan "graduated" from North Carolina's early intervention program with NO NEED for special education services from our public school system!
March 8 - Ethan's 3rd birthday!!
April 15 - ER visit for breathing trouble. Diagnosis = croup.
April 17 - Diagnosed with RSV for the first time. This diagnosis followed his first cold and flu season without the Synagis shot.
April 24 - ER visit for high fever (105 with Motrin) and high heart rate (180s). Diagnosis = virus.
May 5 - Ethan told us, "I don't like my diaper ... I want underwear.", and he's been wearing them ever since!
June 24 - Ethan spiked another high fever. Diagnosis this time = Hand, Foot, and Mouth Disease
July 17 - Cardio check-up. The echo showed an increased pressure gradient across the conduit, signaling the need for a heart catheterization. Cath scheduled for August 14th.
July 26 - ENT follow-up. Ethan's left PE tube is still in place and will hopefully fall out before the need arises to surgically remove it.
August 14 - Ethan had his fourth heart catheterization and it went beautifully!
September 4 - First day of preschool!
September 28 - Follow-up with Dr. I after the cath in August. The pressures in Ethan's heart looked great and we scheduled an appointment for March 2013!
October 13-19 - Disney vacation!
October 23 - Ethan had a one-year follow-up with his orthopedic surgeon regarding the development of his left hand. The x-ray looks great and we'll see him again in another year!
December 17 - Genetics follow-up. An updated microarray was completed and all genetic testing up to this point has been normal. Next visit: two years.
2013:
January 9 - First dental appointment for Ethan. He behaved wonderfully and his teeth look great!
February 28 - ENT follow-up. Left PE tube was still in place. Time for surgery...
March 8 - Ethan's 4th birthday!!
March 22 - Six month check-up with Dr. I. For the first time ever, the pressure gradient went down on its own! Next visit - September 2013.
April 30 - The PE tube was removed from Ethan's left ear. Easiest surgery and recovery yet! (surgery #13)
September 20 - Six month check-up with Dr. I. The conduit looks great and his pressures are stable, but his pacemaker has less than a year of battery life left. Next visit - December 2013.
October 22 - Yearly visit with Dr. F., Ethan's orthopedic surgeon. The x-ray of his left arm remains unchanged! Next visit - October 2014.
December 5 - Unexpected visit with Dr. I due to an abnormal pacemaker call-in reading. Ethan's pacemaker was fully interrogated and he was diagnosed with atrial tachycardia. December's regularly scheduled appointment was canceled.
December 12 - Follow-up with ENT after PE tube removal (April 2013). All is well and we received a "doctor-ectomy". No need to return unless additional concerns arise.
2014:
March 8 - Ethan's 5th birthday!
May 21 - Ethan graduated from preschool! Next stop: KINDERGARTEN!
June 24 - Three month check-up with Dr. I. The pressure gradient across Ethan's conduit went up from 50ish mmHg to 70ish mmHg, and the pacemaker has about six months of battery life. Time to intervene. Cath scheduled for July 29th, surgery scheduled for July 30th.
July 29 - Ethan's fifth cardiac catheterization, prior to open heart surgery.
July 30 - Ethan's third open-heart surgery (surgery #14). Dr. J was able to place a 23mm valve into Ethan's conduit, which should last him a really, really long time. Ethan's pacemaker was also replaced. Discharged four days later!
August 9 - Readmitted to Duke for Postpericardiotomy Syndrome (PPS); discharged four days later.
August 19 - Readmitted for a pacemaker infection that required surgical intervention, but miraculously healed overnight. (For real!)
August 28 - Ethan's first day of KINDERGARTEN, just four short weeks after open-heart surgery!
September 18 - Jeramie and I start MAPP training for our county's foster care program.
September 23 - Follow-up with Dr. I. All looks well after surgery! Next visit: March 2015.
October 21 - Ethan's yearly check-up with his orthopedic surgeon revealed the potential for another hand surgery. After getting second and third opinions, we decided to not move forward with additional interventions at this time.
2015:
February 21 - Our family had the opportunity to attend the Triangle Heart Ball and share Ethan's story with hundreds of attendees!
March 8 - Ethan's 6th birthday!
March 24 - Six-month follow-up with Dr. I, Ethan's cardiologist. Smiles and thumbs up all around! Next visit: September 2015.
April 24 - Our family grew by two kiddos through our county's foster care program! The Tri Mulli becomes The Five Mulli.
May 7 - Ethan is evaluated by an occupational therapist and we official learn he is a "sensory seeker". Outpatient weekly therapy begins, with at-home interventions and strategies.
August 10 - MONO! How a six-year-old catches mono in the summer is beyond us, but he did.
August 24 - First day of FIRST grade!
September 29 - Six-month follow-up with Dr. I. All is well! Next visit: March 2016.
October 21 - Ethan fell off some playground equipment at school and potentially fractured a bone in his left arm. He earned himself a cast for two weeks!
November 3 - Yearly orthopedic check-up. No sign of fracture, and everything else looks as it should! Next visit: November 2016.
2016:
March 8 - Ethan's 7th birthday!
March 29 - Six-month follow-up with Dr. I. Conduit and pacemaker both look great! The pressure gradient across the conduit is within the NORMAL range! Next visit: September 2016
...to be continued...
