Ryne

November 19, 1995

Not to worry is what we were told, numerous people have holes in their heart. On Nov. 25, we had a follow-up visit at home.  Instead of a nurse coming to our house, a pediatric nurse practitioner came because she lived closer to us.   Her name is Sue Grigsby. Sue done a thorough check of Ryne. She questioned me on his eating and sleeping. That evening Sue called me to check on Ryne again. I asked her if she was concerned about something. I had noticed that Ryne had some rapid breathing, but since it had been 10 years since we had our daughter, I thought that maybe it was normal for a baby.

The next day, Sunday, Sue again called me before she went to church. This is a lady that lives 30 minutes from me but I had never met her before the home visit. She wondered how Ryne had made it through the night. At noon, Sue called again. She told me on that call that she hadn't slept much the night before because she was worried about Ryne.

During church, a gut feeling told her he had much more going on than the hole. She asked for my permission to contact the pediatrician in Quincy, IL. The pediatrician then called me and said Sue was very concerned and we should take him to St. Louis to be checked.

Sue then called back and said she had call St. Louis Children's Hospital. They wanted to send a helicopter for Ryne. The entire time all was happening Ryne was sleeping as a normal baby. I told Sue that we would drive him there which would take approx. 2 hours. She called the hospital to let them know the time of our arrival and the type of vehicle we would be in. Two hours later we pulled into St. Louis Children's Hospitals emergency entrance.

Before my husband, Todd, could get the car stopped, the doors flew open and three people , 2 nurses and an ER doctor, took off running into the hospital with Ryne. We didn't know what to do. It didn't appear to us that Ryne was in that kind of shape.  Minutes later we were escorted out of the trauma room where they had Ryne because there was numerous doctors, nurses, machines pouring in and were taken to a small room to wait.

A short while of waiting and the Director of Pediatric Cardiology came in. His name is Arnold Strauss. He told us that Ryne was in very bad shape and if they couldn't get an IV into him to administer medication pretty quick, he would have surgery then.  If they could get him the meds, he would have surgery first thing in the morning. Dr. Strauss also told us if we would have been 45 minutes later, Ryne would have been dead.

They found that Ryne had a coarctation. Dr. Strauss was finally able to get an IV into his drying umbilical cord. Ryne had the surgery the next morning. Ryne did well with surgery. He was born 8lb 11 oz which helped. After being in the hospital for a week, Ryne was released, no other problems known. Ten days later, he began rapid breathing again. It was his sister Ashley's 11th birthday.

I called the hospital and they wanted me to have him in St. Louis at 6am the next morning. At 4am, I left the house with Ryne.  My husband stayed at home to get Ashley off to school. At the Heart Station, in Children's Hospital, I was again met by Dr. Strauss. He took Ryne but asked me to wait in the waiting room. Awhile later, he came to tell me they were admitting Ryne and that he was a very sick little boy. He assured me they would this time find out his entire problems.

A cath was done and showed that the hole was large and his left heart was small. They informed us that they were going to patch the hole as soon as Ryne was strong enough. If the patch would not hold they would have to do the first step of the Norwood Procedure. On Dec. 16, Ryne had his second surgery. The surgery was performed by Dr. Eric Mendeloff, who also did the first surgery.

They patched the hole, which held. With the hole being patched, the blood was able to circulate through the left heart and stimulate growth. During the cath they found Ryne had mitral stenosis, some aortic stenosis and several narrowings throughout his aorta. All of these would have to be addressed at some point in time.

Ryne's case was turned over to Dr. Angela Sharkey, a pediatric cardiologist at Children's Hospital. He was then diagnosed with Shone's Complex. Ryne was dismissed on Dec. 31st, 1995. Ryne grew well and developed normally, with alot of supervision of doctors and many trips to the hospital.

Ryne was cathed again in Dec. 1996 at which time they found some of the narrowings in the aorta were beginning to cause him trouble. After rescheduling surgery several times due to viral illnesses, Ryne underwent his 3rd heart surgery on May 11, 1997.  This surgery was repairing the aorta and a possible mitral valve replacement. The repair of the aorta took so long they decided it would not be good for Ryne to have the valve replacement at that time.

Ryne had a speedy recovery. He was in the hospital 10 days. His valve, although small, was doing fine. April of this year, Ryne had another cath. The cath indicated that again he was beginning to have problems with other areas in the aorta that were narrow. Ryne had his forth heart surgery on May 17, 1999. Again Dr. Mendeloff did the surgery. Ryne was hospitalized for 7 days. Three weeks after surgery he was back to playing soccer with his team.

You would never know by looking at Ryne that he had/has so many problems. He's a little thin, but very active. He talks non-stop. This spring Ryne was tested for his development. On a scale for 3 year olds, with 50% being normal, Ryne scored 79%! 29% above normal. During his life, he's has been hospitalized many times with viral asthma, always in St. Louis. We would take him nowhere else. Ryne's illness has made us very strong. It has showed us you never give up on anything and that anything is possible. Throughout this time, we've listened to terrible statistics of this CHD. We go into every procedure prepared for the worst, then whatever happens has to be better.

Ryne is known at home and by friends as Boo. He has a way of scarring everyone! Ryne is know at the hospital as the "King".