Rylen’s Story

Rylen was a miracle from the beginning. Rylen was born Dec. 23, 2011 – almost exactly one year younger than his big brother. There had been more than 6 ultrasounds, so even with cord complications at birth, no one was prepared for how things would unfold.

Almost immediately we noticed something wasn’t right. He was breathing too fast and instead of his chest rising and falling, his stomach did. Even after numerous visits to the doctor and being told, “He’s fine, some babies do that,” we still knew something wasn’t right.

On March 9, 2012, at 2 1/2 months old, Rylen went to the doctor and was diagnosed with pneumonia. Later that evening he ended up in the E.R. The ER doctor took a look at the x-rays we’d had done and ground transported Rylen (lights and sirens) to the P.I.C.U. (Pediatric Intensive Care Unit) at The Children’s Hospital at St. Francis in Tulsa. That night our whole world was knocked off it’s axis.

On March 10, 2012, we were told our precious boy had a Congenital Heart Defect. Rylen was diagnosed with Double Outlet Right Ventricle, Malposed Great Vessels and a Ventricular Septal Defect. Basically, he has 2 arteries coming out of the right side of his heart instead of 1, plus one of the vessels, instead of bringing in the used, un-oxygenated blood, it’s putting it out back into the blood stream and a hole between the 2 lower parts of his heart. He spent a full week in the hospital, after which he was sent home to be monitored by his cardiologist.

On March 25th, Rylen went to the E.R. due to his pneumonia getting worse. He was admitted until the next day when he was again transported to St. Francis Children’s. This time he would spend 11 full weeks in the PICU!

March 30, 2012: Rylen went into open heart surgery to place the band around the extra artery in order to restrict the blood flow.

March 17, 2012: Rylen went into surgery again, this time to have a trach placed and a MIC-Key button (g-tube or feeding tube) placed. Rylen will now be on a pressure vent that keeps constant pressure into his lungs to keep them from collapsing. He will need this 24/7 although he does not need oxygen.

Toward the end of Rylen’s 11 weeks in PICU, seizure like activity was noticed. He had a MRI and numerous spots were found on his brain. This brain damage was caused by the first 2 1/2 months that he was not getting enough oxygen.

For the next year, Rylen would be back in the hospital for short stays, but nothing major. We worked on getting his weight up enough, plus getting him past the winter so we could work on scheduling a heart catheter. They would have to do the heart cath before they could plan on corrective surgery.

Fast Forward to …

April 16, 2013: Rylen goes into the hospital to have his heart cath.

April 19, 2012: Rylen’s cardiologist calls to tell us that the pressures measured in his heart with the cath are too high for them to be able to do any corrective surgery and they don’t know how to bring the pressures down. Basically…there’s nothing they can do to help him. She was going to send his records to St. Louis to get a 2nd opinion. We were told to give it 2 weeks for their response, but that we were to keep it in the back of our minds that we may still end up losing him!!!

June 12, 2013: Rylen is admitted into St. Louis Children’s Hospital for his heart cath that takes several hours. Afterward we find out they had a lot of trouble gaining access to his main arteries in both sides of his groin. Apparently, all of the heart caths have blown those arteries and they are now blocked, but as usual our Rylen is Superman and his body had already rerouted the blood supply to his legs without anyone even knowing. While they were doing the heart cath, a pulmonologist went in and scoped his lungs (by order of his doctor in Tulsa). They wanted to see if his lungs were as healthy as they seemed, plus take samples to check for any infections, etc. His lungs are PERFECT!! It is ordered that when his surgery is finally done they are to wean him off of the vent – he no longer needs it. They don’t want to do it before to keep his heart from over-working.

June 26, 2013: St. Louis calls… August 13th will be the big day. They have decided to do just one big corrective surgery!

August 13, 2013: Rylen goes into surgery. 8 hours later, the most perfect little pink boy emerges. Now for a few days in ICU, then about a week after, he’s to be sent to St. Francis for a few more weeks to finish recovering.

August 19, 2013: We are told he will be going home tomorrow… No, not to St. Francis – HOME!! This amazing little man is doing so much better than they ever expected and he is cleared for discharge!!!!

Fast Forward almost 6 years….

Rylen is now 8 years old, healthy and active like nothing ever happened. He rocks his scars with pride and still keeps the beautiful smile on his face. The brain damage from the lack of oxygen is the most surprising of all. His last MRI showed that a lot of the spots have disappeared!!! There are no lasting effects from any of it. He truly is our miracle and his Nana’s Superman!!

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