The Kemnitz Family

Ryler was born 11/22/17. Ryler was having trouble breathing so they took him to the NICU and intubated him. They did an ECHO of his heart and found out he had TAPVR and COA. They transferred him via air to Children’s Hospital of MN which is about an 7 hr drive for us to make. They did chromosome testing on Ryler and we found out that he has Phelan McDermid Syndrome. When he was 9 days old, they did open heart surgery. Ryler started having trouble breathing again so they did an X-ray and found lots of free fluid in his chest. They put drainage tubes in his chest and confirmed he had a “Chyle leak”. It took months for the Chyle leak to dry up so Ryler had to be vented the whole time. We tried a couple times to get Ryler off the vent but he just wasn’t use to breathing on his own so we made the decision for Ryler to get a trach. 8 months later we are still in the hospital. He also has a gj feeding tube. We were also just told he now needs a shunt in his brain.