I am a medic, but have not worked in the field for years after a severe back injury. My focus has changed in recent years to life as a stay at home medical care provider, as I have a now 4 year old daughter with Mitochondrial Depletion Syndrome. In the last year, we have had far too many opportunities to get to know the EMS personnel in our city, as Brigid is a frequent flier at the hospital and has a tendency to compensate for illness too long, then deteriorate quickly. She was just discharged yesterday after another Staph sepsis.
Brigid is VERY medically managed, TPN dependent, has Broviac, g tube and j tube... you get the picture. Anyhow, I am trying to write an article for a local publication and would love to get your input on what parents of children like Brigid can do to make transport and treatment easier. I can contribute information from both sides of the experience myself, but I am only one person - the publication is widely read by parents of fragile/complex children, and who knows - maybe something you share with me will turn around to help you in the end.
I am also including a section in the article outlining what does not help, or makes things worse... so please, feel free to vent.
I discovered these forums while searching for information on dual lumen Broviac lines (tough to secure on a little body) and found the discussion interesting - and one I could have learned a lot from while still working in the field. Brigid has made her way through most types of CVLs in her life - Port, PICC, single lumen Broviac, and as of Wednesday afternoon, the dual, so if you have any questions, I'd be happy to answer them based on the care protocols we use here or from a caregiver/consumer perspective.
Brigid is VERY medically managed, TPN dependent, has Broviac, g tube and j tube... you get the picture. Anyhow, I am trying to write an article for a local publication and would love to get your input on what parents of children like Brigid can do to make transport and treatment easier. I can contribute information from both sides of the experience myself, but I am only one person - the publication is widely read by parents of fragile/complex children, and who knows - maybe something you share with me will turn around to help you in the end.
I am also including a section in the article outlining what does not help, or makes things worse... so please, feel free to vent.
I discovered these forums while searching for information on dual lumen Broviac lines (tough to secure on a little body) and found the discussion interesting - and one I could have learned a lot from while still working in the field. Brigid has made her way through most types of CVLs in her life - Port, PICC, single lumen Broviac, and as of Wednesday afternoon, the dual, so if you have any questions, I'd be happy to answer them based on the care protocols we use here or from a caregiver/consumer perspective.