Parents Seek Help for Son's Critical Care

Parents' Story: We have been struggling with our son’s heart condition since he was born with it 22 years ago. Our son has had good days and bad days, more bad days than good. There was a time when his heart doctor had to break the news that he was not able to play baseball, which he was good at, at the age of 12, because he was going to have his second heart surgery ten years after his first one. He was heartbroken because he was not able to play anymore. This was going to be his plan as a grown-up, but he recovered from that. We had to go to Michigan Children's Mott’s for those surgeries.

Nine years later, we discovered that he was struggling to catch his breath just walking to a vehicle from inside the house. So we called his cardiologist and set up some tests to find out he had to go for a third heart surgery for his aorta valve. The cardiologist referred us to two different specialists to do the surgery. As parents, it was hard to make decisions, so we went with Cleveland Clinic since his heart surgeon, who did his first two surgeries, was at Michigan. On March 27th, 2024, we got a phone call to go to Cleveland to do pre-op stuff and consultation to meet the doctor. Then they set up a date and time for his surgery; they set the date for April 23rd, 2024, at 8:30 am. Pre-admission was on April 18th, and some more testing was on April 19th all day. On the day of surgery, the 23rd, they wheeled him to the OR, and everything went well for a couple of days until the second week when he was already supposed to be home.

Things were going wrong. The surgeon was only supposed to do his aorta valve, not his other valves if not needed. But the doctor got greedy and did more than he should have, so now our son has been struggling ever since, going into AFIB where they have to shock his heart back into rhythm several times, and he has to be on dialysis for the rest of his life because of the shock his body went through, damaging his kidneys. Cleveland decided to discharge him to a rehab facility when he wasn’t ready to go. His immune system was still in shock and now attacking every infection possible, so this is where his health went downhill even quicker. We have been in and out of rehabs all year. Now, as of April 7th, 2025, we are at UTMC for his final years of life because they couldn’t keep him in Cleveland for full recovery. His organs are slowly shutting down because of the three infections that his immune system contracted from going into all these rehabs and back and forth to hospitals. We, as parents, shouldn’t have to make the decision to have all of his machines shut off because they cannot do anymore to help him. They give him 24-48 hours to live.

Unfortunately on 5-10-2025 RJ took this last breath and went to be with Jesus.