Guest guest Posted June 4, 2007 Report Share Posted June 4, 2007 I am the grandma of 5 week old Tyler. He was born at 36 weeks 4 lb 15 oz on May 1. He has bil coloboma of the optic nerves (don't know what is vision will be), bil. chonanal atresia (4 wk post op and healing well), post tracheoesphageal fisula (repared at 6 days)repair, g-tube, Left side facial/ear abnomalities (hearing not evaluated yet), larynealtracheo malacia (trached at 3 weeks, NOT vented), and as of Saturday had seizures. The family has been reading as much as we can regarding this syndrome in preparation for Tyler's homecoming in a few weeks. We are being told insurance doe not cover home nursing and Tyler will require 24 hr care. We are looking at getting 6-8 hrs of nursing care 5 days a week so that Mom and Dad can get sleep,but are have a difficult time getting referals and the hospitl case mamager says I may be impossible to find someone to take an infant with a Trach. We are waondering if anyone else who has had this experience has any creative ideas on how the family can manage this with out bring in a nurse. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.