"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"
So Sorry to hear about your loss!
Thanks for sharing your story!
I go to parent sites too sometimes, such as Aaron's tracheostomy site. Some of those resources have been great to send the families to.
I KNOW that starting a program would be a wonderful thing for the other families! I hope you do it. I feel like the parents in my area would benefit from a monthly support group or something so that they could have other people who live closeby to befriend and so they don't feel like they are going through it alone. I think sometimes...Nurses and Dr's are great and all, but unless we actually have a child with a profound injury like that...we will NEVER quite know what it feels like to be in your place. And I think in the chaos of supplies and equipment and scheduling and medical appointments...the needs of the Parents often get neglected....even with nurses, you don't ever get to take a DAY OFF most of the time. Their are just no local resources like that (in my area anyway) Especially for the new parents..it would be helpful.
I think your other idea would be awesome too...and great tribute to your son's memory.
I actually worked a case at a social worker's house. She took in all kinds of medically fragile foster kids, some for a few months, some she adopted...(Alot of times they have a VERY hard time finding placement for someone on a trach or vent). I think she adopted 6 total of varying developmental challenges..not all high tech. She had at least 3 last i was there that got a night nurse..and literally she had her den set up as a nurse's lounge and their would be 3 different nurses their every night, Lol. We referred to her as the Saint, lol. It was a neat place to go.