Info. was taken from Caring Bridge site & here's the link for follow-ups on Owen:
We found out yesterday (9/6/17) that Owen was diagnosed with permanent junctional reciprocating tachycardia (PJRT) and this has caused Owen to go into heart failure. This is a rare form of tachycardia that he was born with, but not discovered until yesterday (9/6/17). There is not a lot of information available on this condition, but I’ll try to explain it as best as I can. Basically, Owen has an extra electrical conduction between the two chambers of his heart that should not be there. This extra electrical impulse has caused Owen to go into permanent tachycardia and is not pumping the blood through his heart effectively. Although, this tachycardia can be reversed with medications or cardiac ablation.
We are not sure when Owen went into tachycardia, but this was discovered about a month ago when I took Owen in for his 3 year check-up. Our new pediatrician was concerned, and Owen was scheduled to see a cardiologist in November. He was not symptomatic at this time, so the pediatrician did not feel this was an urgent matter.
Last week, I was lying next to Owen and I could hear his heart beat without a stethoscope. I could feel it forcefully pounding against my hand. He was sleeping at this time and his heart rate was in the 180’s. I took him into urgent care and had requested labs, an EKG and echocardiogram.
Last Friday, September 1st, the labs and EKG were performed. Owen’s lab results were normal, but the pediatrician thought his EKG looked abnormal. The results were sent to the pediatric cardiologist in Omaha, and we were told by the pediatrician that he may have a benign type of tachycardia. Although, the cardiologist still wanted to see him ASAP and complete the echocardiogram.
Owen saw the cardiologist yesterday (9/6/17) and we were told he has permanent junctional reciprocating tachycardia, cardiomyopathy, and an ejection fraction of 29%. An ejection fraction of 29% is considered moderate-severe heart failure. For this reason, he needs to be monitored in Omaha while starting him on cardiac medications. We are headed to Omaha today and he will be started on verapamil (this is being used to treat the heart arrhythmia) in the morning. The cardiologist was considering cardiac ablation, but the cardiologist and his team are concerned this may be too high risk at this point because of his decreased cardiac function and his weight. They are hoping the medications work well to put him back into sinus rhythm and could take a couple months before his cardiac function is back to a normal range. If Owen doesn’t respond well to medications, then they will have to move forward with the cardiac ablation. The cardiologist is hoping to wait a couple years before moving forward with the cardiac ablation.
At this time, we are uncertain how long we will be at the Children's Hospital in Omaha. This all depends on how Owen responds to the medication.
- Allison Steen
- Kiki Caminis
- Debra Hendrick
- Kathy Martin
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more