Anij
Well-Known Member
- Joined
- Jun 14, 2005
- Messages
- 2,340
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Seriously - at this point, if you don't "get it", there's nothing anyone will be able to say that will change your opinion.
The boy wasn't trached sooner, because he was already intubated - there was no reason to trach him, if already intubated and stable in a hospital setting. The issue is that in order to go home the method of venting needed to be switched over to trach (for fairly obvious reasons, if you're at all familiar with venting.)
In a hospital setting intubation (via mouth or nose) can be handled fairly easily - and the patient can be extubated and re-intubated if needed. Typically if someone is intubated, they are left intubated until a situation requires a change - either they improve (and are extubated), or they elect to go home (and are trached).
In a home setting though you need to have an airway access that can be changed and managed via trach /trach changes (a trach change can be done easily by a parent etc, even the user themselves when applicable) ... to extubate and reintubate requires a substantially more invasive procedure and isnt' a viable "at home" option, even with round the clock nursing.
The issue with USA hospitals is related to insurance and licensing - it's very complicated to have someone transferred out of country, especially if the procedure COULD be handled at home.
I really hope you never face a situation that makes this personal for you. It is personal for me... I've seen 'my' children die because of hospital mistreatment. I know that too well that doctors opinions can have tragic consequences. I also know that parents of children with "terminal" conditions DO know their children, they KNOW when there is "nothing" left of that child ... they DO know when to let go.
The problem is that unless you've lived through this yourself, or are intimated involved with children and families living this everyday ... it's easy to "write these kids off" ... because too often people stop seeing these children as children at all.
"PVS" is not a cut and dry Dx, and if you're familiar with the criteria for the GCS, and other diagnostic tests it's a VERY tricky thing to accurately rate with infants and young children... espeically those who have any "differences" (ie a child who's deaf, or blind, or has CP, or any number of other conditions will almost ALWAYS score lower on a GCS etc because they don't respond to sound/sight and interact in the "typical way" ... The "correction" is very very subjective - something that many people are unaware of.
Coma and alertness/awareness scales are most accurate for those with "normal" hearing, vision, feeling/tactile awareness, and interaction skills ... the more "variables" (hearing/vision loss, altered feeling/tactile awareness, social interaction etc) the less confident the actual assessment can be.
I really hope that you're never in a situation where this becomes personal ... because I almost guarantee that it would profoundly change how you see this.
The boy wasn't trached sooner, because he was already intubated - there was no reason to trach him, if already intubated and stable in a hospital setting. The issue is that in order to go home the method of venting needed to be switched over to trach (for fairly obvious reasons, if you're at all familiar with venting.)
In a hospital setting intubation (via mouth or nose) can be handled fairly easily - and the patient can be extubated and re-intubated if needed. Typically if someone is intubated, they are left intubated until a situation requires a change - either they improve (and are extubated), or they elect to go home (and are trached).
In a home setting though you need to have an airway access that can be changed and managed via trach /trach changes (a trach change can be done easily by a parent etc, even the user themselves when applicable) ... to extubate and reintubate requires a substantially more invasive procedure and isnt' a viable "at home" option, even with round the clock nursing.
The issue with USA hospitals is related to insurance and licensing - it's very complicated to have someone transferred out of country, especially if the procedure COULD be handled at home.
I really hope you never face a situation that makes this personal for you. It is personal for me... I've seen 'my' children die because of hospital mistreatment. I know that too well that doctors opinions can have tragic consequences. I also know that parents of children with "terminal" conditions DO know their children, they KNOW when there is "nothing" left of that child ... they DO know when to let go.
The problem is that unless you've lived through this yourself, or are intimated involved with children and families living this everyday ... it's easy to "write these kids off" ... because too often people stop seeing these children as children at all.
"PVS" is not a cut and dry Dx, and if you're familiar with the criteria for the GCS, and other diagnostic tests it's a VERY tricky thing to accurately rate with infants and young children... espeically those who have any "differences" (ie a child who's deaf, or blind, or has CP, or any number of other conditions will almost ALWAYS score lower on a GCS etc because they don't respond to sound/sight and interact in the "typical way" ... The "correction" is very very subjective - something that many people are unaware of.
Coma and alertness/awareness scales are most accurate for those with "normal" hearing, vision, feeling/tactile awareness, and interaction skills ... the more "variables" (hearing/vision loss, altered feeling/tactile awareness, social interaction etc) the less confident the actual assessment can be.
I really hope that you're never in a situation where this becomes personal ... because I almost guarantee that it would profoundly change how you see this.