[Texas RN]

Hey, Fellow Nurses,
I have signed up for this forum today because I need help. I have been taking care of adult hospice patients for 3yrs. Recently our hospice lost it's Pediatric Hospice Nurse and my team has been given these patients. I need help.
Saturday 5am, a 6 month old PVL patient finally let go and is now an angel. BUT, the death process was totally unexpected. I do remember our Medical Director saying that death would be from respiratory failure, but did not expect what happened.
Baby "P" started having 7 min periods of apnea with no heart beat at 1AM on Friday. This continued until Sat 5am when she finally died.
I knew this death would be difficult, but it was actually torture for the family. This baby was receiving Morphine soln and lorazepam soln. Per my hospice there was nothing else we could do to ease the process...Does anyone know of something else I could have done?

[river1951]

What is PVL? I have limited pediatric experience. Will be very interested in hearing suggestions. California has finally approved hospice and curative treatment for children with its Medi-Cal program, so we may be seeing more kids.
God bless you for taking on this hard work.

[earle58]

pvl = periventricular leukomalacia.
in its' most gen'l sense, it is death of a part of the brain near the ventricles.
the white matter softens r/t actual brain death.
etiologies are vague, but some experts say it is r/t decreased blood flow in parts of the brain; could happen in utero, at delivery, or days after delivery.
s/s are vague but it is typically a motor deficit presentation.
pvl is not known to be fatal.
but too often, intraventricular hemorrhage occurs simultaneously and that is how the baby dies.

i'm not understanding the resp failure, but since it is a neurmuscular disorder, it could possibly affect diaphragmatic contractions....

all i know is our peds unit had a similar case except the infant was 4 mos old.
before hospice, they did a cranial u/s and an mri, and saw the bleed.
she was immediately put on hospice.
she too, had loooooong periods of apnea but our med'l director told us that brain damage at that point, was so advanced, that the baby had no knowledge of any suffering.
but as the op stated, the parents are inconsolable.
they had their priest present.
baby "sally" was given mso4 and versed.
i had cared for her a couple of times, and she died on my shift.
i wouldn't pronounce her until her pupils were fixed.
even during apnea, her pupils were very sluggish but still reactive.
i encouraged mom and dad to hold her.
sally was ok; very, very traumatic for mom and dad.

i've had a few peds cases but it is something i don't think i could do full time.
so, to the op, no, i really don't think there is anything you can do for the parents.
it's a heart-wrenching time with no known interventions.
i did have the med'l director write a script for mom.
dad got it filled and mom did fare better with a bit of ativan.
but still.......

leslie