...I have been visiting this site since March 20th of this year when our son received his trach. The respitory therapist recommended it while we were in training on how to care for the trach and I am glad she did because it is very informative.
Brian was 12, he turned 13 in December, when he recieved it. He has a rare disorder that was named after his case study at The National Institute of Health in December of 1999. His skeletol system is fragile, 30 fractures, mostly in his long bones and especially in his left leg. He has rods in both femurs and his left tibia. He also has tumors that are centered behind his nose, in his chin and jaws that require periodic surgeries to reduce their size when they begin to disfigure his face. They named the disorder gnathodiaphyseal dysplasia (GDD).
It was during a surgery in March to reduce the tumor under his tongue that resulted in the tracheostomy. The tumor had pushed his tongue back into his throat restricting his airway and resulting in severe sleep apnia. The surgery failed as they could not pull his tongue forward to it's normal position. It has been quite an adjustment for us but we all have adjusted to it and consider it a blessing because Brian can now sleep, and eat, better than ever.
My wife, Carol, and I are glad to join this forum and look forward to getting to know everyone. We also have a healthy 18 year old daughter, Sarah, who has been a big help to us during this transition.