I just wanted to let you all know that my son passed away very unexpectedly. We tried every drug possible, nitric oxide, HFOV all to no avail. His last chest x-rays had not one single drop of black (available air space in lungs).
Our son fought for life from the minute that his bio-father caused his massive brain injury. He put up a brave fight with this illness but he had so many complications from his brain injury and nearly a life-time on a vent. As much as we loved and adored him, he is finally free and at peace.
We declined an autopsy but he had Klebsiella pneumonia that appeared to be highly resistant to everything.
I thank you all for your support and comments over the years. Lots of tips/tricks/comforts I learned on here and incorporated so that I ended up being one of the favorite homes in my agency.
I have already started reading other posts and commenting and hope that I can still be of value to nurses in the future. I am going to try and start a program at our hospital for parents of newly trached children. I think that I have a lot of experience and can help other parents acclimate. Years ago, the hospital nurses were awesome but they didn't ever care for a child at home which is a hugely different experience.
I feel very strongly that every child deserves a loving family and hope that at some point in the future we can become family to another trach/vent child.