Leo has had a somewhat eventful spring and summer. Beginning this past March, Leo had some concerning changes on his echocardiogram. Without a cause such as a virus, changes on an echo can mean rejection. After a long and nerve wracking day of waiting for test results to come back, his transplant doctor came in and told me that Leo was positive for rhinovirus (a cold). He gave him a diuretic to clear his lungs and Leo recovered well. We had never been so elated to hear that our child “just” had a virus!

Leo recovered from the rhinovirus but began having fevers again about a month later in April. By the time his 2 year heart transplant anniversary was nearing in May, these fevers had been going on for a month along with a worsening chest X-ray, meaning that more fluid was on his lungs. He was admitted to the hospital the night before his 2 year cath for more rejection concerns. Thankfully he was in great hands for his heart cath and the procedure went smoothly. He received a zero for his biopsy results, meaning no rejection was detected! We all breathed a sigh of relief when those results came back!

The fevers continued on and off for another three months and he was admitted again for a few days in July. He has seen some other consulting teams including infectious disease specialists and rheumatology. Since everything has now been ruled out, it’s most likely a periodic fever syndrome that he will outgrow. We just hope the spacing between fevers continues to be longer and longer! 

He is otherwise catching up nicely on his development and enjoys running laps around the yard! He has recently started eating which we are thrilled about as well. 

Thank you to everyone who has recently donated to COTA for Team Leo and keep an ear out for an upcoming Chipotle fundraiser next month!