JJ's history

Jerry John was born May 16, 2008 and named after his grandpa who since passed on May 9, 2009. Jerry was a little small, supposedly from IUGI, but otherwise healthy when he went home from the hospital. After a few weeks, Jerry started having some fast breathing episodes which were not too alarming and just seemed like funny new born breathing. However, it seemed to increase and intensify over the next few days, especially after drinking his bottle and out in the warmer temperatures. He still seemed very happy, alert, and active for his 2 1/2 weeks of age. He was having some noisy breathing at night, which we were watching for acid reflux or allergy. At our second appointment to the pediatrician on June 3rd I was anxious to ask about these symptoms but was sure it was nothing serious. Before I could mention it, our wonderful nurse practitioner Terri Hannon and pediatrician Dr. Chad Olsen asked if I had noticed him breathing this fast before. His heart rate was also fast and we were sent for some blood work and x-rays. I wanted to be a good mama and follow through but really thought this was unnecessary. We waited at the hospital for results which were inconclusive. His x-ray showed that he could have heart failure or it "could have been from how he was laying." The uncertainty concerned me as I watched his breathing more consistently become worrisome and thought about the possible effects of my lupus on his heart.

On June 5th we went to Edward Hospital to consult with an amazing cardiologist, Dr. Mehmet Gulecyuz. His first impression of JJ after a few tests and looking at him was that he was fine and we could do an echo of his heart the next week. I was a little anxious by this time and asked if we could just do it then to clear my mind. The nightmare started then as JJ was diagnosed with dilated cardiomyopathy and EFE. John and big brother Isaac came to the office from the Children's museum and we were escorted to the PICU. That was only the beginning of the surprises that Jerry had in store for us.

We spent one week at Edward and then transferred to Hope Advocate (an amazing hospital with the best nurses) for further treatments and procedures. Cardiomyopathy is so rare that everything seemed like guess work. We did not know if Jerry would need a heart transplant or if the experimental treatments would work. Also, the doctors were wavering on weather or not Jerry needed a heart cath procedure where they could look in his heart with cameras. There was one very rare anomaly mentioned that they were confident he did not have based on his heart ultrasound or echo, but still wanted to confirm with a cath. We reluctantly agreed to this invasive procedure because if there was any chance at all that he had this ALCAPA it could be fixed and maybe cure Jerry or at least prevent further damage to his heart. Results were negative and Jerry's original diagnosis of idiopathic cardiomyopathy (possibly due to lupus) was sustained.

Things in the past year after Jerry's dianosis were stressful and uncertain but mostly stable. Jerry has been very active and happy, although he has had significant problems with eathing and growth.