Walking for Elijah

I am walking for my son, Elijah.

Elijah is a very happy and energetic 2 1/2 year old toddler. He is so full of love and pure joy. Elijah has been on his medical journey with Children’s Hospital since he was 2 days old.

Elijah was flown to Children’s Hospital of Pittsburgh of UPMC when he was just 2 days old due to having breathing issues and weak pulses. We were lucky to have Dr. Thomas Lynch, now Elijah’s pediatrician with Children’s Community Pediatrics, who first “found” Elijah’s weak pulses. Once Elijah arrived at Children’s, they immediately began doing a full work up on him. From the findings he was admitted to the Cardiac Intensive Care Unit (CICU) for Coarctation of the Aorta and multiple heart defects. This was all a surprise to us, as we knew none of this while I was pregnant with Elijah.

At 1 week old, Dr. Victor Morell performed Elijah’s open heart surgery. Dr. Morell was amazing and came out personally to explain everything to us as soon as he finished Elijah’s surgery. Elijah experienced a couple setbacks and was not able to breathe on his own without the ventilator. They did many tests and found out that his right diaphragm was paralyzed. Four days after his heart surgery, he had Right Diaphragm Plication surgery done by Dr. Melita Viegas. Elijah spent 18 days in the CICU and then spent another 10 days in the stepdown unit before he was able to be discharged. Without these amazing surgeons, cardiac anesthesiologists, doctors, nurses and all of their teams/staff we would not have Elijah here with us today.

Elijah continues to follow with Dr. Matthew Zinn in Cardiology – he is the best cardiologist and always listens to any of my concerns.

Elijah also follows with Nephrology because he was born with a Dysplastic Kidney. He only has his left kidney; his right one never formed. We love Dr. Agnieszka Swiatecka-Urban, she is very thorough at all of Elijah’s checkups.

He also follows with Dr. Glenn Cannon in Urology. Dr. Cannon performed an outpatient surgery on Elijah in February of 2016.

In December of 2017 Elijah began following with the Cleft-Craniofacial Clinic due to having a sub-mucous cleft palate and speech delay and also began following with ENT due to multiple ear infections and fluid buildup.

At the end of December 2017, Elijah underwent another small surgical procedure to have tubes placed in both ears. Dr. Noel Jabbour in ENT performed this procedure. Dr. Jabbour is a very kind doctor and explains everything in great detail and with visual aids.

Elijah recently began following with Audiology and we are still waiting on some hearing tests with them.

We recently learned that Elijah has a Genetic Syndrome that he was born with 22q11.2 Deletion Syndrome, meaning that Elijah was born with a piece of his 22nd Chromosome missing. He follows up with Genetics for this syndrome. Dr. Woerner and Dr. Jenkins with Genetics explained this syndrome in great detail and answered any questions that I had. They also referred us to Immunology, which Elijah now follows with, as well due to having reoccurring respiratory infections and Asthma.

Elijah began following with the Dental Clinic at Children’s Hospital in March, and he is currently scheduled for evaluation appointments with Endocrinology, Ophthalmology and the Child Development Unit.

Anytime Elijah gets sick or isn’t feeling well we always choose Children’s Hospital Emergency Department and they have also been great with Elijah and any of the issues he is having at that time. We have been there more times than we would like, but there is not any other ED we would choose.

Children’s has been phenomenal with Elijah and this is my way to give back. I am forever grateful for all of the staff at Children’s Hospital of Pittsburgh of UPMC and everything that they do. It is truly a blessing to have Children’s in our backyard.

To learn more about the Walk for Children’s, visit walkforchildrens.com.