^^ Angel^^ Ryan D. - Quilt Finished in 2007

Born: September 10, 2006 - Passed: May 1, 2008

Illness: Mitochondrial Disease, Autoimmune Neuromuscular Disease, 28 week premature baby, Seizure Disorder, Subglottic Stenosis, Dysmotility of GI system, GERD, Laryngotracheamalacia

Note after his passing:

5/21/08

Back in the summer of 2007 your organization made a beautiful quilt for my baby,Ryan.  Ryan had an emergency Tracheostomy in October 2007 and a central line placement as well for IV nutrition. They were not confident he would make it through the 4hr surgery. He did and spent the next 3 months at Children's Hospital. It was a combination of getting his weight up and getting a diagnosis. After numerous blood draws,a muscle biopsy,liver biopsy (for liver failure) sepsis we finally got our diagnosis of Mitochondrial Disease. Could have thought of 5 other things I would him rather have had.  He came home in January doing a lot better but his GI system never got better. He got a yeast infection and Staph infection in his central line that almost took his life. He was on life support for 1 week and spent another 2 months in the hospital. Beginning of April we had to make a very hard to choice and brought Ryan home on hospice care as there was nothing left for us to do. We had done everything. He was dying. Comfort and quality of life out of the hospital for him to spend time with his dad and I and older brothers was our concern now.  His body was tired and all systems were failing him. We had 13 wonderful days with him before he passed away on May 1, 2008 in my arms.  Thank you for the quilt. It is a treasured memory for me.

Danielle

Ryan's Story

Written by Ryan's mom Danielle in July 2007

Ryan was born at 28 weeks gestation. He was born not breathing,weighing 2 lbs. 13 oz. 14 in. He was recusitated and put on a venilator and taken to the NICU were he stayed for 58 days.

Ryan has had numerous surgery's. He has had laser surgery on his eyes for Retinopathy and Hernia surgery. He has severe GERD which causes apnea and oxygen. He has tonic seizures. His first one he stopped breathing and I need to preform CPR. He has a swollowing disorder called Dysphagia and requires G-J tube feedings over 18 hrs a day. He has an obstructed airway called Subglottic stenosis and a floppy airway. He has had dilation to his airway that has failed and landed him in critical condition in the PICU for 14 days on May 16,2007.

On June 19th 2007 Ryan woke up very floppy. He was due to have a reconstruction done on his airway on July 5 but when we went for pre-op on June 28th his airway doctor deemed him neurologically unstable. We saw his Neurologist who was very concerned. Ryan had lost 2 lbs in 3 weeks. He had very low tone that seems to get worse as the day goes on. He has regressed in milestones and no longer can sit unassisted. Ryan is undergoing testing for Myasthenia Gravis, a chronic nueromuscular disease. We have since been informed Ryan's GI system has stopped and it is thought due to the muscle issues he is having. We are waiting tests results to confirm Myasthenia Gravis or an metobolic disease at this time.